Siobhan was born June 9th 1999 in Vancouver, Canada, 4 days late. Her birth was normal. We noticed at about 4-6 months old that she didn’t bear weight and, when her feet were on a flat surface, they pronated (rolled inwards) quite severely.
Our family doctor sent her to see an orthopedist at our Children’s Hospital, who explained that she would need orthotics when she started walking. Then, upon closer examination, he remarked how long her fingers and toes were. He referred us to a genetic doctor to have Siobhan checked for the Marfan syndrome.
The genetic doctor sent us to an Ophthalmologist for a ‘slit lamp’ eye exam and to a Cardiologist for an echocardiogram and x-rays of the hands, feet and spine. During this spine x-ray, Siobhan’s scoliosis was detected. She was 20 months old, and her COBB measured 23 degrees lumbar and 17 thoracic. Our orthopedist at the time felt it would get worse as she grew, but recommended the “wait and see” approach. Siobhan had an x-ray every 3 months for 9 months with no change. It was then recommended that we cut down on the x-ray exposure, and she would be seen every 6 months.
About two months after that decision, I noticed in a recent photograph that one of Siobhan’s shoulders was markedly “dropped” (uneven). We decided not to wait for another 4 months, and took her back for another x-ray. Her lumbar curve had increased to 35 degrees and her thoracic to 26 degrees. That’s when she went into her Boston TLSO, which she wore 23/7 for 9 months, with her curves maintaining at approximately 35°/26°.
But by one year later, her lumbar curve was 45°, and I was growing very concerned. Our orthopedist had originally told us that a spinal fusion would probably be necessary when she reached 12 years old, but later mentioned that it could be necessary when Siobhan was 10 years old. By our last visit, when Siobhan had faithfully worn the brace for 23 hours a day, 7 days a week, he was suggesting fusing her spine at 8 years old.
This is when we looked into serial casting as an option. Thanks to the Infantile Scoliosis Outreach Program’s website and the information I learned through Heather Hyatt, we found the only doctor, Jacques D’Astous, MD, who was willing to cast her in a plaster of paris cast (POP jacket). He applied Siobhan’s first plaster cast in June, 2004, at Intermountain Shriners Hospital in Salt Lake City, Utah, when she was 4 years old. At that time, her curves were measured at 32° lumbar/20° thoracic (in the cast). Her second cast was applied at the end of August 2004, reducing her lumbar curve to 8°/thoracic 17°. Her third cast saw her lumbar curve at zero/thoracic 25°, (measured on x-rays while in the cast.)
She is currently back in a Boston TLSO, which she wears 16-20 hours a day, and is getting lots of physiotherapy and swimming. Dr D’Astous will continue to follow Siobhan every 3-4 months and, when he feels her curves are increasing, will apply another series of POP jackets to buy as much time as possible for her grow.
Siobhan’s diagnosis is a “connective tissue disorder/possible emerging marfans/possible MASS phenotype.” We all know this means that her spine may just keep on curving, but we will all do everything we can to stall any surgery until she is older, much older.
Thank you for reading my little girl’s story. And if you have any questions please feel free to email me at jabostock@yahoo.ca
January 2008 Update
Siobhan continued to wear a brace 16 hours a day, until November 2005, when her doctor suggested she be evaluated for VEPTR (Vertical Expandable Prosthetic Titanium Rib).
We’d done a lot of research and believed that this fairly new procedure would help Siobhan, and improve the quality of her life even more.
The Mehta casting had bought us time, reduced Siobhan’s curves, and had helped correct her rotation, but her connective tissue disorder meant that we needed something more. Her doctor explained that these VEPTR’s would literally act as an “internal brace”.
We knew this surgery would be invasive in the short term, and a major commitment in the long term. But we trusted Siobhan’s Orthopedist.
In May 2006, Siobhan was the first child to receive the VEPTR dual hybrid (attached to her iliac crests) at the Shriners, Salt Lake City. Her curves went from 34 degrees thoracic/ 49 degrees lumbar to 0* thoracic/ 12* lumbar – All the doctors were very excited! Us too!
Siobhan received a confirmed diagnosis of “Emerging Marfan Syndrome”, by the Genetics Dept of our Children’s Hospital in January 2006.
Her first expansion of her dual VEPTR’s in November 2006 went smoothly – 6 months after the initial implants. But by January of 2007 we started to notice that Siobhan seemed unable to stand straight anymore – She’d acquired a “stoop” that she didn’t have before.
We emailed back and forth to her doctors in Salt Lake City, who informed us that we may need to look at moving these 2 VEPTR’s from the pelvis, as for some children, this stooping was becoming a problem. Both doctors agreed that relocating them to the laminae should help Siobhan.
Back.com definition: Laminae
The laminae are two flattened plates of bone extending medially from the pedicles to form the posterior wall of the vertebral foramen
Intermountain Shriners found Siobhan an appointment at the end of April 2007, where her surgeon moved the pelvic devices. Surgery was harder than expected, but as always within a couple of weeks, Siobhan bounced back!
Siobhan is doing well in Grade 3, tap dancing and playing the piano – Having the wonderful childhood she deserves.
Kylie Anne Lether was born August 8, 1997 in Salt Lake City, Utah. She weighed 6lbs. 10oz. and was 21 ½ inches long. She was born with Infantile Idiopathic Scoliosis and Developmental Hip Dysplasia. Her back had a big hump on the left side, which was her spine lifting her shoulder blade up. Her hip sockets were straight instead of curved and there were no femoral heads. Doctors are sure both of these problems were caused by the way she was positioned and had ran out of room in utero. Kylie was full term, breech and on a diagonal facing outwards. I was told that she had to have been in that position for quite some time to have caused such damage.
Because she had both problems that couldn’t be focused on at the same time, her orthopedic doctor focused on the most severe, which were the hips. We were told that if the hips were not corrected as early as possible, she would have to undergo many surgeries involving cutting of the hip sockets, metal plates and screws. There would also be the possibility that she wouldn’t walk normal or even at all. In the mean time, her scoliosis was progressing. It was already in the high 20’s.
At two weeks old, she was placed in a Pavlik harness brace and then when she was four months old, she had her first of many Spica casts applied. After five weeks in her first Spica cast, she was hospitalized for two weeks with bacterial meningitis from an ear infection that didn’t respond to antibiotics. She was also misdiagnosed many times. When she was finally diagnosed, we were told that they didn’t think she was going to make it. If she did make it through, she would be mentally retarded, blind, deaf, and not live a long life. To treat her meningitis, doctors had to cut the Spica cast off. While being treated for the meningitis, her right leg had become dislocated and she needed surgery to get it back into the socket. During this time, we learned that she had a Duplex Kidney, which is a kidney that measures a half length longer than the other. She underwent testing to determine if the kidney was functioning normal, which it was. We also learned that she was deaf in her right ear. We all assumed that it was caused from the meningitis; we later learned through a MRI that her ear bones in the right ear had abnormalities from birth.
Kylie is a fighter!! She pulled through the meningitis with some possible nerve damage that makes her muscles weak and almost impossible to build strength. The left side of her body is affected more than her right side. She ended up being in Spica casts for about five months. Her hip sockets developed normally and the femoral heads developed, as well.
Finally, her doctor was able to focus on her spine. By this time, her curve was 45 degrees. She was immediately placed in a TLSO brace. The brace corrected the curve to 34 degrees. We would go to regular follow up appointments and the curve always stayed 34 degrees. When she was 3 years old, her curve started progressing. It was progressing very quickly. Her curve was now 52 degrees. Her doctor discussed Risser casting with us and we agreed to try it. She wore two different casts for three months and her curve was back down to 34 degrees. After the Risser casts, she went back into a TLSO brace. At that time, we started discussing with her doctor some of the other non-surgical options because we knew it was just a matter of time before her curve would progress. He told us about the Halo Traction procedure. The Halo Traction is the gentle pulling of the soft tissue (joints and muscles) to help straighten the spine. Weights are hung from a rope woven through a pulley system to a carabineer attached to the top of the Halo. The traction gently pulls against the child’s body weight to straighten the spine, gently and nonsurgiclly. The Halo Traction Treatment for progressive infantile scoliosis was a new procedure to the U.S. and at the time was only available at Shriner’s Intermountain Hospital in Salt Lake City, Utah. Fortunately, that was the Shriner’s Kylie went to and we only lived 20 minutes away.
We read a booklet published by Shriner’s Intermountain about the Halo Traction procedure that showed pictures and told us how the whole thing worked. We also watched the video with Olivia and Breann, two of the first children in SLC to benefit from this non surgical procedure. After reading and watching, I FREAKED!! I knew that one day she would have to have this procedure done, but I didn’t think I could put her through that after all she had already been through. My husband and I decided that we would allow her doctor to do the procedure when it became necessary. We knew it was the only way to avoid early fusing of the spine and we figured that we would have enough time to get use to the whole idea, before she had to have the Halo. Five months later her curve was at 70 degrees, HALO TIME! I was so upset and couldn’t stop crying. Kylie walked up to me and asked why I was crying and then said, “Oh, it’s because my back got worse huh? Well that’s ok mom, because the front of me is not broke.” And then went back to playing with some toys. That’s when I realized that I needed to pull it together. My child was stronger than me!
Kylie started the Halo Traction in May 2002. She had to stay at Shriner’s with her Halo for 2 months. She was unbelievable! She never complained or wanted her halo off. She loved it and couldn’t wait to show it to everyone and tell them that she was an angel. She never wanted her doctor to take it off.
She had a wheelchair and a walker that she used with the Halo. When it was almost time for the Halo to be removed, we needed to decide on what was next for treatment. I was terrified to have the Halo removed because I knew that with the Halo on, her spine couldn’t get worse. The Halo traction corrected her curve from 70 degrees to 24 degrees. The last time her curve was close to that, was when she was about four months old. We knew that if we had her placed into a TLSO brace again, her curve would progress very quickly and we didn’t want to loose the great correction we gained from the Halo Traction. In talking with her doctor, we learned about Subcutaneous Growth Rods. We were very nervous to try the Growth Rods because we didn’t know what the outcome would be and knew the risk of spontaneous fusion to the spine at the attachment points. They would have to surgically lengthen them about every six months as she grew. We were also told that we could have the rods removed at any time if we decided to, and could go with some other treatment. We decided we would give them a try.
Kylie had her Halo removed and underwent Subcutaneous Growth Rod surgery. I was amazed at how quickly she recovered from the surgery and that she didn’t have much pain at all. She immediately took to her new rods, although she was sad to have her Halo taken away. She called them her special rods. When she had her Growth Rods lengthened for the first time, six months later, her curve was still 24 degrees. Every time the rods were lengthened, a couple of degrees would be lost. After two years with the Growth Rods, she started developing Kyphosis above the rods. The Kyphosis progressed very quickly, to 95 degrees. In May 2004, the Growth Rods were removed and she underwent the Halo Traction for the second time. Kylie was so happy to have her Halo back, and I have to admit that I was too. She did so well with the first one and the correction we got was great, how could I not be happy!
Kylie was in the second Halo for two months. Because she is older, her spine has become rigid, and Kyphosis is harder to correct. So, we didn’t get as much correction as last time. Her scoliosis was 45 degrees corrected to 40 degrees and the Kyphosis was 95 degrees corrected to 56 degrees. After the second Halo was removed, we decided to have her placed into a plaster Risser cast, this time with neck support to help with the Kyphosis.
She had her first Risser cast with neck support on for about ten weeks. We didn’t gain any correction in it. She had the second cast applied. We did gain some correction this time. The Kyphosis has been corrected to 45 degrees, 11 degrees of correction. She had that cast on until November 2004. When the cast was cut off, her spine instantly regressed back to 49 degrees. That same day, while we were waiting for her brace with neck support to be completely finished, her spine progressed from 49 to 60 degrees in just six hours.
In March 2005, she had her first orthopedic appointment for x-rays since she’d been wearing the new brace. She measured at 60 degrees, still. After her orthopedic appointment, we met with the neurologist at Shriner’s to have Kylie evaluated. She read her history and asked a lot of questions, then examined her. She then told me that she didn’t think Kylie’s physical disabilities and muscle weakness were caused by the meningitis she had at five months of age. She believes Kylie has a type of nonprogressive muscle myopathy, which she was born with. I didn’t know what to say, that wasn’t at all what I expected to hear. I couldn’t help thinking, why wasn’t this noticed earlier, like when she was born. From the time she was two weeks old, she had been in a brace or cast for her hips and then in a brace or plaster cast for her scoliosis. She was not able to physically develop when she was suppose to and then having meningitis at a very young age, no one ever noticed that something else was wrong with her. It was assumed, that the meningitis was the cause of her physical disabilities and lack of muscle tone.
The neurologist scheduled Kylie for a MRI of the brain, to see how much and how the meningitis had affected her brain. We received the MRI results that same day. The scans showed that her frontal lobe was affected the most. The frontal lobe was covered with many large white patches, which are basically dead parts of the grey matter due to lack of oxygen. Her entire brain is covered with smaller white spots. The doctor at Primary Children’s Hospital pulled up her past CAT scans to look at them. The first scan was when she was admitted with meningitis, had no white spots anywhere on the brain. The second set of scans were taken three days later, had all the white spotting. Fortunately, the damage wasn’t bad enough to have taken any functions away, just enough to alter some things a little. Kylie is a very smart kid. Sometimes she needs constant reminding to do certain things. She has a hard time concentrating at times. These are a few things she will have to deal with. Kylie will also undergo a muscle biopsy the next time she is sedated for a plaster cast or Halo traction, to determine what is exactly wrong with her muscles.
In May 2005, Kylie was one out of fifteen children selected to be a part of the first ever, Early Treatment Trial Project (ETTP) training conference, for progressive infantile scoliosis. The conference was held at Shriner’s Intermountain Hospital in Salt Lake City, Utah. It was sponsored by the Infantile Scoliosis Outreach Program, a service of Ability Connection Colorado. The conference was held to train doctors in the early treatment casting technique from the pioneer of this treatment, orthopedic physician, Miss Min H. Mehta, MD, FRCS. Miss Mehta retired from the Royal National Orthopedic Hospital in London and Stanmore, England.
Miss Mehta examined each child with the doctors and practitioners observing her examination techniques. We learned a lot of new things about Kylie, some good things and some not so good. We learned that the only benefit Kylie will ever have from casting is to hold her curve where it is, no permanent correction. Also the casts can not untwist her severely twisted spine. Kylie’s spine is too rigid. That was very upsetting to hear. Miss Mehta was
however, able to give us great relief in knowing that our decision of growth rods did not cause Kylie to develop kyphosis. She told us that her vertebrae in
that area were already twisted and that she would have developed kyphosis anyway. Miss Mehta told us that because her spine is so rigid and it’s been like this for so long, it might start to self fuse. She highly recommended that Kylie needed to spend up to 4 hours a day out of her brace doing special exercises and stretching techniques which she showed us, in hope that it will loosen her spine and avoid self fusing. I was terrified to have her out of her brace that
long, she progresses very quickly. When her last cast was cut off and we were waiting for her brace to be finished, her spine went from 49 degrees to 60 degrees in just 6 hours. Kylie’s been out of her brace every day for 2 to 4 hours doing constant stretching and exercising.
Kylie had her orthopedic follow up at the beginning of June 2005. We were quite nervous for this appointment because the outcome of this appointment would determine if she would undergo her third Halo traction. Kylie doesn’t have to undergo a third Halo for now. At her appointment three months later, her spine measured at 60 degrees in the brace. In June 2005, her spine measured at 55 degrees out of brace! We were shocked!
I believe that the special exercises, stretching techniques, and spending that much time out of the brace to do them, is the reason she is at 55 degrees now. She has also been doing a lot of swimming in our pool. Kylie is now able to get herself off the ground with no help from anyone or anything. We were told she may never accomplish that, she did!
Kylie will continue to wear her brace with neck support and enjoy the summer in her swimming pool. Kylie has been wearing this brace since November 2004. It was believed that this brace would not hold her spine at all. This brace has helped her spine from progressing! Kylie has her next orthopedic appointment in October 2005.
2005-2007 Update:
Kylie had her orthopedic appointment in October 2005, her scoliosis measured 60 degrees. She also has a lot more rotation. On February 6, 2006, she underwent her third Halo Traction. She was very happy! She was also able to have a muscle biopsy. The muscle biopsy came back positive for myopathy, no specific type. Her myopathy is non-progressive, although if she doesn’t stay active and work her muscles, they will atrophy. She will be unable to regain the muscles. The muscle tone and strength she has now, is all she’ll ever have. It is uncertain at this time how this will affect her as she gets older and bigger.
Two weeks before her Halo was to be removed, she was approved to undergo a procedure called the VEPTR. (Vertical, Expandable, Prosthetic, Titanium Rib.) VEPTR is a surgical procedure that consists of two rods that are made of titanium. They are adjustable, and are placed on the outside of the rib cage. They are attached to a set of top ribs and to the pelvis, she has one on both sides. The VEPTR is internal bracing for the spine and must be surgically adjusted as she grows, approximately every six months.
This procedure couldn’t have come at a better time. We had been told that plaster casts were no longer an option, the Halo Traction was not correcting much at all, and back braces alone would never hold her spine. Eventually, her heart and lungs would suffer. At this time, a spinal fusion was not an option either. Kylie was nine years old, she is small for her age. Her Duplex kidney causes her internal organs on her left side to be crowded. The bottom part of her lung it folded under and her heart has been shifted out of its proper spot. If the growth of her torso is stopped, the internal organs will become even more crowded and this would be life threatening.
Kylie had her VEPTR dual hybrid surgery on April 3, 2006 at Primary Children’s Hospital in SLC. She was transferred there from Shriner’s Intermountain Hospital, in her Halo Traction. The co-inventor of the dual VEPTR hybrid performed her surgery with assistance from her orthopedic doctor, since birth. She did wonderful, everything went as planned. The VEPTR has done amazing correction for her. With her spine being so rigid, we were all surprised how much the VEPTR dual hybrid had corrected her spine. After two months in the Halo Traction and before the VEPTR, her scoliosis was at 63 degrees. After the VEPTR it was at 42 degrees. Her kyphosis was 70 degrees before the VEPTR, after it was ZERO! Her back was so flat, it wasn’t even that flat when she was born.
Four days after her surgery, she was transferred back to Shriner’s Hospital, where she had been staying for two months prior to surgery, to finish recovering. She was able to go home the following week. Every six months, she will return to have her VEPTR expanded by the brilliant surgeon surgeons in SLC..
In August 2006, four months after her VEPTR was implanted, the left side came off the rib. She went in for surgery later that week to have it re-implanted. Her doctor felt like that the reason for it coming off was that there was too much tension on the VEPTR in that area where the kyphosis was being held to zero degrees. During surgery, he released some of the kyphosis and moved the VEPTR down to the next rib. A week later the VEPTR on the right side came off and broke the rib. Her doctor re-implanted the rod that had eroded through the rib and reattached it on the rib below, like the other side had been. He also went ahead and expanded the VEPTR, she was only a month away from her expansion date.
On October 30, 2006, Kylie underwent soft tissue releasing of the hips, back of both knees, and her left shoulder. With myopathy of the muscles, her soft tissues don’t grow at the same rate as her bones. The soft tissues become contracted like tight rubber bands and require to be released with surgery. This is something she will have to do again until she is done growing.
Kylie hit another obstacle with her VEPTR. Her kyphosis had drastically progressed right above where the VEPTR is implanted to the ribs. Her upper back and neck had completely collapsed. This was a complication due to her myopathy. She doesn’t have the muscle strength to hold up any unsupported parts of her spine, therefore that part of her spine collapses. Both of her doctors agreed that she needed to wear a brace with neck support so her neck didn’t worsen and get her on the schedule at Shriner’s for another Halo Traction as soon as possible.
On January 8, 2007, she underwent Halo Traction number four. She was able to keep the VEPTR in while being in traction because the area that needed to be straightened was above the VEPTR. This was the first time a Halo Traction was done with the VEPTR still implanted. Everything went very well. Her upper back and neck were corrected back to the way it was before collapsing.
Now the plan was to expand her VEPTR and move it to higher ribs to get better control, put her in a Halo Brace for two months while she healed from the surgery, then put her in a brace with neck support.
On February 8, 2007, she had her VEPTR expansion and revision surgery. Things did not go as planned. Kylies surgeon was unable to move the VEPTR up any higher. Her kyphosis would not allow it. He couldn’t get the left side to the next rib and the right side he couldn’t get it to stay on the rib. It immediately popped off and broke the rib. The VEPTR was put back on the original ribs as before. Kylie stayed in traction with only half of the weights as before, until the end of February. Then the Halo Brace was put on and she went home.
Kylie was in the Halo Brace for three weeks, we noticed that her VEPTR on the left side was starting to bulge out more than normal. I took her to get an x-ray to see if the VEPTR was coming off or if it was already off. The VEPTR was still on, but barely. This was happening because her upper back and neck, once again, was collapsing. No one could believe that it had collapsed with a Halo Brace on.
On March 26, 2007, Kylie underwent her fifth Halo Traction to correct her collapsed spine once again. She was very happy to have her Halo Traction back. Kylie told us that the reason she loves being in the Halo Traction, was because it allows her to move and do things she can’t do without it, because of her weak muscles. She is very proud that she holds the record for having the most Halo Tractions for spine straightening in the United States, by a long shot.
On April 23, 2007, we had no other options but to have the upper part of her spine that continued to collapse, fused. She underwent a fusion from T1 to T5. Her surgeon since birth performed the surgery. The area was reinforced with wire and she has a rod that runs alongside it. Her skin was closed with forty staples. Her skin has been cut so many times in that area that it is solid scar tissue. The staples hold the skin together better. The Halo Traction was left on for two more weeks with half the weights.
Kylie’s recovery was amazing! She was up and on the go four days after the surgery. She finally was able to go home on, May 11, 2007.
Since being home and recovered, she is a lot weaker than she was before. Although she was very active in her Halo, being in traction for so long had allowed muscles that couldn’t be used, weaken. She can no longer do some of the things she used to do before the last two Halo Tractions. This is very devastating to us. She continues to do therapy on a daily basis, to maintain what muscle strength she has left.
On September 17, 2007, she had her VEPTR expansion and another revision of the left side. The VEPTR on the left side continued to migrate and start to come off the rib. Kylies doctors tried to attach a growth rod and move the left side off the rib and over to the area of her spine that had been fused. They were unable too, they didn’t have the right size of connector, so they re-implanted it back on the rib in a different spot. A week later the bulge was coming back more and more each day. By the end of the week, the left VEPTR had come off once again. October 1, 2007, she underwent revision surgery again. This time her doctor had the right connectors. He removed the left VEPTR, connected a growth rod to the part of the device that is attached to the pelvis, attached it over to the bottom of the rod that runs along the fused area of her spine.
So far, things seem to be working! She is scheduled for a VEPTR/Growth Rod expansion in April 2008.
Kylie’s doctors have done so much for her. There are so many doctors out there who would have never of done half of what these two have done for her. They are both determined to do whatever they need to do to allow her to get the growth she needs, before she undergoes a full spinal fusion.
We’re not sure what the future will bring for Kylie, she is fighter. She has overcome so much in her ten years of life. I have no doubts in my mind that she will continue to successfully overcome what ever life throws her way!
She is our precious little angel!!!
Thank you for reading Kylie’s story. We will keep you updated. Feel free to e-mail me at Nlether@yahoo.com with any questions regarding Kylie’s story.
Hadley was born in May 2007. She was born perfectly healthy. Around the age of 5 months, I (mom) saw that one side of Hadley’s ribs were bulging out. I showed my husband, and he thought she just had more muscle strength on that side from learning to sit. Hadley’s head also tilted to one side, and we were told she had torticollis. We were not overly concerned with this diagnosis, since our other daughter also had this. At Hadley’s 6 month appt., my husband thought we should show the doctor Hadley’s back to make sure everything was normal. The doctor looked at it and agreed that Hadley’s ribs were bulging out on one side and she referred us to the local Children’s Hospital.
At 6 ½ months we got Hadley into the Children’s Hospital to see a pediatric orthopedic surgeon. They took an X-ray and that day Hadley was diagnosed with idiopathic infantile scoliosis with a 30 degree curve. The doctor explained to us that most children’s spine’s will straighten up on their own, but there is a percentage of children who have progressive scoliosis. He said he wanted to wait 3 months to see what Hadley’s back was going to do. Not knowing anything about scoliosis, my husband and I agreed to this.
3 months passed and we went back to get more X-rays of Hadley’s back. They looked horrible! Hadley (now age 9 months) had a 55 degree curve. That day she was fitted to get a Kalibus brace. We thought that this brace would correct Hadley’s back within a year or so and scoliosis would be out of our lives forever. At 10 months, Hadley finally got her brace. She had to wear it 24 hrs a day. The only reason we got to take it off was for bath time. Once Hadley got her brace, I decided to do some research on it. I was desperate to find any information on this brace. Unfortunately, I could not find any published research that could prove that bracing could correct scoliosis in an infant. But after praying and searching, I came across the, “Infantile Scoliosis Outreach Program” (ISOP) website. I searched the site high and low for kids using braces, but I could not find any. I saw however, that many of the children on this site were in casts. Even though Hadley was in a brace, I decided to join the “CAST Support Group” because I was desperate for any information or anybody to talk to who knew what we were dealing with. Once I started talking to people on the site, I stumbled across other parents that had personal experience with Early Treatment with EDF (elongation, derotation, flexion) casting, bracing, and other treatment modalities.
People on the “CAST Support Group” welcomed me nicely and showed interest in my situation. I was starting to hear that a lot of their situations sounded similar to ours. They informed me of a new procedure called Early Treatment EDF Casting, which was to try and correct a child’s spine, not just hold it. I was never told that Hadleys brace would not correct her spine. I started to get scared and talked to my husband about what I was hearing. He called Hadley’s orthopedic nurse to clarify the purpose of the brace. Turns out, everything I was hearing on the CAST Support Group was right. A brace was not going to correct Hadley’s back, it was only an attempt to hold it until she is old enough to have surgery! We were told by the nurse that hopefully that wouldn’t be until maybe age 12 or 13; whenever she hits puberty. We were shocked and devastated! This is the last thing we would want for our child. Ineffective bracing until premature surgery! People on the support group informed me of the nearest Early Treatment Center of Excellence, which is the Shriners Hospital for Children in Chicago. So, I immediately called them to try to get Hadley an appt. I was told we had to fill out an application and that it takes approximately 3 weeks to get accepted. Thankfully for God’s guidance and the Cast Support Group, I was able to get advice on how to navigate through the frustrating medical system and we were able to get Hadley an appointment for the following week.
At 11 Months old, we took Hadley to the Shriners in Chicago for a 2nd opinion. This is when we found out Hadley’s back had progressed to 74 degrees while wearing the brace! My research indicated that internal organs could be compromised at approximately 75 degrees, depending on the child…. It was God’s control that led us to the right place before Hadley had permanent damage. The surgeon strongly recommended getting Hadley casted the next day. We agreed to it. We spent the night in the hotel in fear, yet still had hope for Hadley’s back.
The next day, we arrived at the hospital at 6 a.m. to get Hadley casted. We were very scared to have our little baby anesthetized, but knew this is what was best for her. 45 minutes after Hadley was in the operating room, the surgeon came out to inform us that Hadley did very well and was waking up in the recovery room. With the correct casting frame and a solid understanding on the principles of the Early Treatment Process, he was able to get her spine down to a 17 degree curve in her first EDF cast, which was remarkable. We are even more hopeful because Hadley is so flexible. It took a little while to adjust to the cast, but Hadley did very well. I thought not being able to bathe her and let her play in the sand and water would be pure torture, but it wasn’t. She didn’t seem to mind at all. The cast became a part of her life and she is passing all milestones on time.
We were informed that any child with a curve over 50 degrees will more than likely end up needing surgery in the long run, but we are very hopeful. In the back of my head I have always thought, if we had just found a surgeon trained in this gentle, corrective method from the beginning, the chances of Hadley being corrected completely and permanently from the cast would have been so much greater. However, the first doctor that saw my daughter practiced the “wait and see” approach to treatment and in that time her spine progressed 50 degrees! I am just so thankful to have found ISOP when we did, before her spine got any worse.
After 4 weeks of Hadley being in her cast, we went back to Chicago for a follow up appointment. Her X-ray showed that Hadley s spine was at 27 degrees (in cast). It had relaxed a bit, but that’s normal. Then after 2 ½ months of being in that cast, we went back to get it removed and had her 2nd cast reapplied. The surgeon came out to inform us of the correction achieved from the first properly applied EDF cast. He was very pleased with the correction. In Hadley’s first cast, her spine went from 74 degrees to 47 degrees (out of cast). She had 27 degrees of correction. This was phenomenal. The team at the Shriners Hospital for Children in Chicago had done wonders for our baby girl, what more could we ask for!
Hadley stayed in her 2nd cast for about 2 months and then got it changed. From her 2nd cast, she had 8 degrees of correction. We were going in the right direction. Her back was now at 39 degrees. In Hadley’s 3rd cast, she was down to 0-5 degrees(in cast) and the correction from her 3rd cast was 6 degrees. Hadley’s back is now at an miraculous 33 degrees(out of cast).
So far, with God’s help, we are beating the statistics that say anything over 50 degrees can not be corrected from a cast. We pray that Hadley’s spine will continue to get lower in degrees and eventually grow straight from the continual guidance of the EDF serial casting. We hope to avoid surgery, but if it is needed, we are so thankful for Early Treatment with EDF casting, which has the ability to buy my toddler invaluable growing time for her chest cavity until she is older for a more definitive spinal surgery.
Hadley is now in her 4th cast with a 12 degree curve(in cast). She will get her 5th in January. While in the cast, Hadley has learned to do everything any normal child could do, but maybe a little bit differently. Hadley developed a hop when she crawled in order to get places. This helped her when she crawled because she could not bend her legs at the normal crawl position. Hadley has recently learned to walk in her cast as well. It took her a little bit longer to master her balance, but she has accomplished this and is walking every where now.
We are so thankful for Dr. Mehta and ISOP with their Early Treatment Awareness Campaign. It is Dr. Mehta, ISOP, the parents on the CAST Support Group, and the pediatric orthopedic surgeons who are practicing this gentle cure that are helping to make this treatment more widely available in the U.S. and around the world. Without this casting, our toddler would have already had premature spinal fusion/hardware. We are grateful that Hadley may get to avoid repeated and invasive spinal surgeries on her growing spine. Thank you, Dr. Mehta and ISOP for sharing this life saving treatment with parents and the medical community. And Thank you, God for staying at our side and being in control of this situation. Without you, Hadley would not be able to beat the statistics saying anything above 50 degrees needs surgery and would not have been corrected 41 degrees in only 6 months!
After 5 years of trying to have a baby, God blessed us with twin boys. My pregnancy was full of uneasy feelings and lots of “what ifs”. There were many complications along with 3 months of bed rest. After the danger point passed, the doctors sent me home. One week after being home I went into labor.
Ryan and his fraternal twin brother, Matthew, were born in April 2005. They were born 4 weeks early, both were healthy. Our boys came home 2 days later.
The boys were about 2-3 weeks old when my mother noticed Ryan’s ribs felt funny. My mother-in-law had made comments about it as well. Not knowing anything about Infantile Scoliosis, I thought this was due to them still being small babies. As Ryan grew, we noticed he always leaned his head to one side. We now know he had torticollis. It was never treated and he slowly outgrew it.
While bathing the boys, around 7 months old, I noticed Ryan’s back protruded on one side. I still knew nothing, but wondered often if something was wrong. At his 9-month check-up, we pointed it out to his pediatrician. She immediately told us she felt he may have Infantile Scoliosis. We had heard of teenage girls having scoliosis, but had no idea babies could have scoliosis. It was a weird feeling not knowing. She referred us to Texas Scottish Rite Hospital for Children in Dallas, Texas. Shortly after the pediatrician’s referral, Ryan was diagnosed with Progressive Infantile Scoliosis. X-rays showed a 29 degree right thoracic curve. They recommended a CT Scan and MRI to rule out any congenital abnormalities. They also wanted us to see a geneticist. We were told they would watch him closely and wanted to see him back in 3 months. At that time, his doctor also talked in-length about Early Treatment with casting. We were stunned and confused, but knew we wanted to avoid surgery if at all possible. If Ryan’s curve continued to progress, casting sounded like the best treatment for him.
In 3 months time, Ryan’s curve had progressed from 29 to 34 degrees. We then knew casting was what Ryan needed, and it would be in our very near future. Ryan still, however, needed the MRI. He and his brother were constantly sick so we had to continuously put this procedure off. Ryan was finally well enough for the MRI and thank God it came back normal. We saw the geneticist and she felt his scoliosis was mainly “positional” while in untero. The geneticist did not think there was an underlying syndrome diagnosis.
The procedures were all done and all came back normal, so the date was set for Ryan’s first cast. He was 15 months old (still a baby), had just started walking and I was SCARED to death. A cast?! A hard cast? No baths, no playing in water. He is going to stink! How will he sleep?! He will not be able to do all the things his twin brother will do! My mind was going crazy with all these bad thoughts of a cast. I needed to talk to someone else who had been through the same thing.
Days before his first cast was applied, I found ISOP on the internet. How had I missed it all those times I was searching for answers and information? I was still so scared and had no idea what I might learn, but ISOP had a support group. I wasted no more time. I immediately joined the group.
Fast forward to November 2008…………Ryan is now in a brace ONLY at night!!!!! He was in a series of 6 casts over 14 months. And wore his brace 23 hours a day for 10 months. Today his curve is down to 8 degrees and he looks GREAT!!!
Casting was nothing like I thought it would be. Within a week Ryan was walking again just fine. His baths? Well, we came up with other fun bath ideas. Playing in the water was just a special treat for the boys when his cast was removed the day before the new one was applied.……..they didn’t miss a thing. Stinking….we just didn’t have that problem. And he slept……like a baby, within a week of his first cast.
Ryan adjusted so well to the cast and didn’t miss a beat. He did everything his twin brother did and more! Looking back, I only wish I would have known about Early Treatment sooner. Ryan would have been in casts very early on. Casting is a gentle method for treating Infantile Scoliosis. And, for most babies, if treated early and properly, has the ability to train their young spines to grow straight, gently and permanently and surgery is not needed.
We are so informed about Infantile Scoliosis because of ISOP and the CAST support group. I have learned more here, and through the support group than what any doctor could have told me. The support group is a God send. I don’t know how I would have made it through without communicating with other Moms and Dads going through the same thing.
If you are just discovering your baby/child has Infantile Scoliosis, join the group. It has a wealth of information for you and allows interaction with other parents who are experiencing the same situations. I cannot thank ISOP and Dr. Mehta enough for all they have done to educate us about Ryan’s condition.
Ryan will go in a few weeks for a check-up and we are in hopes he will be finished with the brace.
Early Treatment with EDF (elongation, derogation, flexion) casting works.
If you have any questions about Ryan’s treatment feel free to email me. Ryanswalk@yahoo.com
To view a blog dedicated to Ryan and others with infantile scoliosis go Here.
Our daughter Bridget was born on the 22.2.01. She is the fourth child in our family and her two brothers and one sister were over the moon at having a new addition to the family.
Bridget spent her first year drowning in the attention of her siblings. She sat on her own at about 8 months and it was at this time that I noticed she seemed to sit more on her left buttock. Looking back at photos she also had her head turned to the right in most photos though I did not pick that up at the time. When she was viewed from the back while sitting, it looked as though her spine curved towards the left side.
At 10 months I took her to our GP and then to a paediatrician. The paediatrician said the curve was an optical illusion and not worth xraying. I left the consultation relieved but continued to watch her spine as she was sitting or in the bath. At 16 months Bridget was still not walking. She had developed a bottom shuffling technique which involved leaning to the left and using her left hand behind her and her right hand at the front to propel herself quite quickly around the floor.
I returned to the paediatrician when Bridget was about 18 months. She was still bottom shuffling and when sitting had creases visible on one side of her waist. I pointed this out to the paediatrician but she said she could have built up muscles on one side of her body from bottom shuffling. She felt the curve was an illusion created by her posture and advised me not to be concerned about it.
Bridget finally walked at 22 months. As she progressed from the first toddling steps to competent walking and running her gait remained uneven. She seemed to weight bare more on the left leg and her right shoulder was lower than her left. When standing and in swimming togs we could clearly see a curve in her spine.
I returned to our GP when Bridget was almost three. I showed him the curve in her spine and he agreed with me that it was unusual. He referred me to another paediatrician. This paediatrician felt there was nothing to worry about as he believed her apparent curve was postural and told me we could xray if I liked but he wouldn’t foresee any need for intervention.
The xray revealed a 38 degree thoracolumbar curve. We were referred to a spinal surgeon who arranged for her to have an MRI as he felt sure there must be some neurological problem which was contributing to her scoliosis. This doctor explained that while she was under anaesthetic she would be cast for a TLSO brace.
The MRI and a subsequent consultation with a paediatric neurologist could find no neuromuscular involvement and with no vertebral abnormalities present, Bridget’s curve appeared to be Infantile Idiopathic.
Six weeks later we returned to the Spinal Surgeon to learn about Bridget’s brace. He told us that the brace would not correct the curve nor stop its progression and he estimated by the time Bridget was 10 years old the curve would be so large and the resultant deformity so disfiguring that he would be operating to fuse her spine though she would be far from skeletally mature. He said without the brace the curve would progress much more quickly and he estimated he would be fusing her spine at 7. He explained that as the spine could not grow at the fused area this would result in her having a short trunk and long arms and legs like a “daddy long legs spider.”
Our family was horrified by this prognosis. We sought the opinion of another spinal surgeon in Brisbane as well as consulting with two others in Sydney and Melbourne. Each emphasised how rare Infantile Idiopathic Scoliosis is and mentioned that it was more prevalent in the UK.
I understood that the treatment Bridget was receiving was the standard treatment in Australia but was keen to research how Infantile Idiopathic Scoliosis was treated in other countries. I started with the UK. The Scoliosis Association of the UK website www.sauk.org.uk explained how Infantile Scoliosis could be corrected if treated early enough with a series of plaster casts. I gleaned this information from the SAUK site as it was in 2004. I notice that it has since changed and no longer mentions infantile scoliosis as a separate and curable condition using serial plaster casts.
To apply these casts the child is anaesthetised and suspended on a paediatric traction table. The spine is gently manipulated and placed in a corrected position. The plaster cast is then applied to hold the spine in that position. A widely trimmed mushroom shaped window is left trimmed around the tummy/chest to allow for expansion (chest expamsion window). Another hole is left selectively at the back over the concaved flattened side of the ribs so that the child’s own breathing and laughing encourage symmetrical growth. This alters the direction of the spine and allows it to grow in a straightened position. The cast is changed every three months and the process repeated until the curve has been corrected.
It was emphasized that it is the growth of the spine while it is held in the corrected position that ensures that it stays straight and never needs fusion. For this reason the best and quickest results have been obtained in children under two years as it is at this age that the most rapid rate of growth occurs. All this information I learned from reading the SAUK website as it was at that time and from speaking to Dr Mehta on the phone.
Dr Min Mehta has been successfully using her Early Treatment casting technique in the UK for over 30 years.
I sent Bridget’s xrays to Dr Min Mehta. After viewing Bridget’s xrays and photographs Dr Min Mehta said she believed 18 months of serial plaster casts changed every three months would cure Bridget’s scoliosis but only if treatment was started straight away. She recommended we see a specialist at the Royal National Orthopaedic Hospital in Stanmore, England since she had recently retired from NHS practice.
It was about this time that I read Ella’s Story on the Scoliosis Associan of Australia (SAA) website. I contacted them immediately to see if there was any possibility that serial plaster casting was being used to treat Infantile Scoliosis in Australia. Ella was born in the UK and had since returned to Australia. Ella was casted between 6 months and 14 months by Dr Mehta just before Miss Mehta retired. She is now 13 yrs old and has remained straight. At 6 months Ella had a 60 degree curve. .
In October 2004 we saw the pediatric spine specialist at the RNOH, Stanmore. He applied the first of Bridget’s plaster casts under general anaesthetic. We were delighted to see that in her cast her curve improved from 38 degrees to 21degrees.
Bridget wore her first cast for almost three months. She was a very active and happy child who loved jumping on the trampoline and riding her bike. Wearing a plaster cast did not restrict these activities. On January 9th 2005 we returned to England to have her plaster removed and her second cast applied. At this time I met with Dr Mehta and showed her Bridget’s cast that was applied by the specialist at the hospital from which she recently retired. Miss Mehta was disappointed to see that the specialist was not using the correct mushroom shaped windows to prevent barrel shaped ribs.
At this point, I had made contact with Heather Hyatt, ISOP and the CAST group. I applied to have Bridget included in the first ever ETTP (Early Treatment Trial Project) organized by ISOP at Shriners Salt Lake City. Dr Mehta travelled to SLC to train staff and demonstrate her method of Early Treatment w/ modified EDF casting using a group of patients who were lucky enough to be the first to be treated with this method in the USA. We were very fortunate to have Bridget accepted into this group in May 2005.
Bridget had 14 months of casts from aged 3 yrs 7 months to 4 yrs 9 months. During that time her curve went from 38 degrees to 8 degrees in cast but her curve would go back to 25 degrees out of cast. The casts totally got rid of her rotation and rib hump. At this time she was diagnosed with a connective tissue disorder,
At this point with the Doctors and physios talking together we decided to change to a brace and combine aggressive bracing with an exercise (core strength) program and posture training.
For the last 8 years we have travelled to Salt Lake City every 6 months to have custom fitted braces and shoe orthotics made for Bridget. (who also has a leg length difference) She currently has a providence brace for night time and a modified Boston brace based on the Mehta style Cast with same mushroom shaped window at the front.
Bridget is now almost 12 and a half. She is 155cm tall and enjoys swimming, playing netball and the same active life as any 12 year old. She still has a double curve which has increased over the years (52 thoracic and 42 lumbar) but we are hoping to avoid surgery (fingers crossed) depending how much growing she has left and what her curves do. At the moment, thanks to the hard work of Drs and physios over the years she has no pain, minimal deformity and a wonderful quality of life.
I would dearly have loved the opportunity to cast under 2 when we had the best chance of achieving a permanent cure like Ella in England and the 100s of kids now cured in the USA thanks to Dr Mehta’s treatment.
Guardianship is a court appointment which gives a person or an organization responsibility and authority for making decisions on behalf of an adult who is unable to manage his/her own affairs and make his/her own decisions. Guardianship for adults in Colorado is authorized by Colorado Revised Statutes, Title 15, Article 14, Part 3. The person for whom a guardian is appointed is called a “ward.” Guardianship is a serious responsibility and one that should be approached with the same seriousness and attention which you apply to your own life. Besides being a “legal representative” for your ward, you will also be an advocate and watchdog. You may also be a surrogate family member, teacher and a friend. While guardianship provides important protection and assistance, it is also very restrictive. It can remove all of a person’s legal rights to manage his/her own life and must be imposed only as a last resort.
If you are considering becoming a guardian for someone you must first consider if limited guardianship would be sufficient. Colorado law presumes that only limited guardianship is necessary and you must prove to the court otherwise if an unlimited guardianship is requested. Limited guardianship may include authority to make only medical decisions, only residential decisions, or only financial decisions. Or it may include a combination of one or two areas. In all other matters, the guardian has no authority. An unlimited guardianship can be reduced to a limited guardianship, or the reverse can be done, through a petition to the court which made the initial guardianship appointment.
Duties of a Guardian
As a guardian you are expected to understand and carry out the responsibilities outlined in the specific guardianship orders of your appointment. When in doubt about your authority to decide about a specific matter, you may always seek prior approval from the court. While individual guardianship orders may contain specific instructions, there are general duties and responsibilities which every guardian is expected to fulfill.
Colorado law gives guardians authority to make decisions regarding the ward’s support, care, education, health, and welfare.It further states:
“A guardian shall exercise authority only as necessitated by the ward’s limitations and, to the extent possible, shall encourage the ward to participate in decisions, act on the ward’s own behalf, and develop or regain the capacity to manage the ward’s personal affairs. A guardian, in making decisions, shall consider the expressed desires and personal values of the ward to the extent known to the guardian. A guardian, at all times, shall act in the ward’s best interest and exercise reasonable care, diligence, and prudence.” (C.R.S. 15-14-314(1))
In addition, a guardian shall:
Become or remain personally acquainted with the ward and maintain sufficient contact to know of the ward’s capacities, limitations, needs, opportunities, and physical and mental health. (C.R.S. 15-14-314(2)(a))
Take reasonable care of the ward’s personal effects and bring protective proceedings if necessary to protect the property of the ward. (C.R.S. 15-14-314(2)(b))
Spend the ward’s money that is in the guardian’s control, for the ward’s current needs for support, care, education, health, and welfare. (C.R.S. 15-14-314(2)(c))
Save any of the ward’s excess money for the ward’s future needs. If a conservator is appointed for the ward, the guardian must pay the excess money to the conservator, at least quarterly, to be saved for the ward’s future needs. (C.R.S. 15-14-314(2)(d))If your ward has substantial assets (more than the amount required for his/her daily living needs), it is necessary that a conservator be appointed. A conservator is a person or organization appointed by the court to manage the financial affairs of another. The process for appointment of a conservator is similar to that for a guardian. If your ward is also your relative, it may be possible for you to serve as both the guardian and conservator.
Immediately notify the court if the ward’s condition has changed to the degree that guardianship may no longer be necessary.
Inform the court of any change in the ward’s residence.
Immediately notify the court of the ward’s death.
Powers of a Guardian
Unless limited by the court order, guardians have the following powers:
Consent to medical or other care, treatment, or service for the ward. (C.R.S. 15-14-315(1)(d))Advance Directives are arrangements and desires which your ward may have expressed in writing while competent. The Living Will is an example of such an advance directive regarding withholding or withdrawing medical life support systems and/or nourishment. You are obligated to respect your ward’s wishes and directions contained in the Living Will.Another Advance Directive is a Medical Durable Power of Attorney with which your ward would have designated an agent who is to be responsible for making such decisions on his/her behalf. The agent specified to make decisions on your ward’s behalf in the Medical Durable Power of Attorney, has precedence for making health-care decisions over a guardian unless the Medical Durable Power of Attorney is revoked by the court. A guardian may not revoke the ward’s Medical Durable Power of Attorney. (C.R.S. 15-14-316(3))
Apply for and receive money payable to the ward, guardian or custodian for the support of the ward from any government or private source. (C.R.S. 15-14-315(1)(a))
If not in conflict with other court orders, the guardian may take custody of the ward and decide where the ward is to live. Guardians must obtain permission from the court to move the ward outside of the State of Colorado. (C.R.S. 15-14-315(1)(b))
If there is no conservator, the guardian may take necessary actions to force an obligated party to support the ward or to pay money for the benefit of the ward. (C.R.S. 15-14-315(1)(c))
Depending upon circumstances, a guardian may allow a ward to make certain decisions affecting the ward’s well-being. (C.R.S. 15-14-315(1)(e))
With specific authority or direction from the court, a guardian may consent to the adoption or marriage of the ward. (C.R.S. 15-14-315(2))
A guardian may petition the court for authority to apply for a divorce or legal separation on behalf of the ward if it is in the best interest of the ward based on evidence of abandonment, abuse, exploitation, or other compelling circumstances, and the ward either is incapable of consenting or has consented . (C.R.S. 15-14-315.5)
Rights, Immunities, and Limitations
With approval by the court, guardians are entitled to reasonable compensation for services as a guardian and to reimbursement for room and board provided by the guardian or one affiliated with the guardian. If there is a conservator, other than the guardian or one affiliated with the guardian, reasonable compensation and reimbursement to the guardian may be paid by the conservator without order of the court.
Guardians are not required to provide for their ward, or pay for their ward’s expenses, out of the guardian’s own funds. However, you must very carefully read all documents before signing. If you sign something personally accepting financial liability, you may be held personally liable. Neither are guardians liable to third parties for acts of the ward solely by reason of the guardianship. Further, a guardian who exercises reasonable care in selecting parties to provide medical or other care, treatment, or service for the ward, is not liable for injury to the ward resulting from the negligent or wrongful conduct of the providers.
Guardians may not consent to involuntary commitment, or care and treatment of a ward for mental illness, developmental disabilities, or for alcoholism or substance abuse. In all of these instances, a guardian must proceed under the appropriate statute.
Reports to the Court
Within 60 days of appointment, or as otherwise directed by the court, guardians must submit a written report to the court including:
the condition of the ward,
the guardian’s personal care plan for the ward, and
account for money and other assets in the guardian’s possession or control.
Thereafter, guardians are required to submit annual reports which cover:
the current mental, physical, and social condition of the ward;
the ward’s living arrangements;
medical, educational and vocational services provided and the adequacy of the ward’s care;
a summary of the guardian’s visits with the ward and actions on behalf of the ward, including the ward’s participation in decision-making;
whether the current care plan is in the ward’s best interest;
plans for future care; and
recommendation as to continued need for guardianship and changes.
In addition, the court may appoint a visitor to review a report, interview the ward or guardian, and make any other investigation the court directs.
General Responsibilities
As a guardian you must know and care about all aspects of the well-being of your ward. If he or she does not live with you, you must visit and spend time with him/her as often as possible. It is your responsibility to make arrangements for, keep informed about, and maintain documentation of your ward’s current situation regarding finances, living arrangements and care givers, health and medical care, education and training, personal needs, preferences and desires, employment, recreation and leisure time.
It is very important to get acquainted with the people who are significant in your ward’s life, for example, family, doctors, nurses, recreation directors, case workers, employers, therapists, teachers, friends, and neighbors.
You are expected to plan for your ward’s future. Anticipate and be prepared for emergencies. Be aware of options in living arrangements or daily living activities in case changes might be necessary. Make sure that insurance or appropriate health care benefits are in place. Assure that funeral and burial or cremation arrangements are in place.
It is important for you to be familiar with laws, rules and regulations that may impact the life of your ward. For example, laws and regulations regarding nursing homes or other residential facilities; laws against discrimination and safety requirements if your ward is employable; education laws if he/she is under age 21; any government benefits and entitlements that he/she might be eligible to receive. You will also need to know how to advocate for your ward in these matters. There are community resources available to provide help, information and assistance.
Making Decisions on Behalf of Someone Else
Even though, as a guardian you will have responsibility for protecting and caring for your ward, it is important to carefully distinguish between providing adequate protection and imposing excessive restrictions. As has already been stated, Colorado law requires guardians to include their wards in making decisions. A ward’s ability to participate will depend to a large extent upon the magnitude of the decision. For example, what to wear to a particular event is a much easier decision than whether or not to have surgery. The kind of information and how it is presented will also have a bearing upon the ward’s ability to participate in a decision. Information should be tailored to the understanding of the individual; the language must be simple, repetition may be necessary, and visual aids may be helpful. Following the attempt to inform, special efforts should be made to determine whether the person has in fact understood the information, perhaps through quizzing or other feedback. You may also enlist the help of others to explain a matter to your ward, possibly in a different setting and at a different time of day.
As a guardian you must weigh all decisions critically and objectively. The following guidelines may be helpful. First, allow your ward to make the decision alone with support and assistance only as needed. If that is not possible, include your ward in a decision-making process whereby all relevant information is discussed and your ward is an active participant. Finally, if a decision must be made by you alone, you must be sensitive to the expressed preferences of your ward, if known, and to the greatest extent possible, make decisions based upon the same set of values he/she would use if making his/her own decisions. In the case of a ward who has never been able to make his/her own preferences known, you have no choice but to make the decision that you believe is best for your ward.
When making decisions for your ward, you must apply informed consent principles in the same manner applied when making decisions about your own life. For example, before giving consent you should have answers to the following questions:
What are the alternatives?
What are the risks?
What are the benefits?
What are the consequences?
What discomforts might occur?
Can I change my mind later?
Termination or Modification of a Guardianship
A guardianship terminates upon death of the ward, or if the ward no longer meets the standard for establishing the guardianship. (Incapacity by clear and convincing evidence.) A ward, guardian or any interested person may petition for removal of a guardian on the grounds that removal would be in the best interest of the ward or for other good cause. Before terminating a guardianship, the court will follow the same procedures to safeguard the rights of the ward as apply to a petition for guardianship. The court may remove a guardian or permit a guardian to resign. A petition for removal or permission to resign may include a request for appointment of a successor guardian. (C.R.S. 15-14-112 and 318)
The court may modify the type of appointment or powers originally granted to the guardian if the extent of protection or assistance is currently excessive or insufficient or the ward’s capacity to provide for support, care, education, health, and welfare has so changed. (C.R.S. 15-14-318(2))
A temporary substitute guardian may be appointed for up to six months when a guardian is not performing effectively and the ward’s welfare requires. (C.R.S. 15-14-313) Except as otherwise ordered by the court, a temporary substitute guardian has the same powers as the original guardian.
Delegation of Power by a Guardian
By the use of a power of attorney, a guardian may delegate to another person, for a period not exceeding 12 months, any power regarding care, custody, or property of a ward, except the power to consent to marriage or adoption. This provision is useful if a guardian must be out of the geographical area for an extended period or during a medical leave. (C.R.S. 15-14-105)
Transfer to another country or state
The court making the appointment of a guardian may transfer the guardianship to a court in another county or another state if the court is satisfied that a transfer will serve the best interest of the ward. (C.R.S. 15-14-107(1))
For more information please call 303-228-5382, or send an email.
Living Will- Declaration Concerning Medical or Surgical Treatment
Can only be set up while a person is competent to understand the consequences of the decisions.
In order for a Living Will to become operative, four conditions must exist:
The individual (the declarant who has signed the Declaration) must be terminally ill due to an incurable or irreversible condition.
The individual must be unable to decide whether to accept or reject medical or surgical treatment.
The individual must be unable to make that decision because of unconsciousness or incompetence.
The individual, or one acting for the individual, must submit the Declaration to the physician for entry into the individual’s medical record.
When these required conditions exist, the attending and one additional physician must:
Certify the individual’s terminal condition in writing on the hospital record.
Immediately attempt to notify the individual’s spouse, any adult child, parent or agent under a Medical Durable Power of Attorney (in that order) of the certification.
After the physicians’ certification is made, a period of 48 consecutive hours is granted by law for a challenge to the validity of the Declaration.
A parent, adult child, spouse or MDPOA agent may challenge the Declaration in the district court in the county in which the patient is located.
A legal representative is appointed for the patient and notice is given to certain adult relatives.
The court determines the validity of the Declaration.
A physician, or a hospital or person acting at the physician’s direction, is free of criminal or civil liability for acting in accordance with a valid Declaration.
In certain situations, the law allows the physician to take actions not specifically provided in the Declaration:
If the declarant is pregnant and if life-sustaining measures would enable the fetus to develop and survive, the Declaration is not enforceable.
If pain results from the discontinuance of artificial nourishment, the physician may order that nourishment be provided to alleviate the pain.
A Declaration does not have to be notarized, but must be witnessed by two witnesses. Said witness shall not be:
The attending physician or any other physician; or
An employee of the attending physician or health care facility in which the declarant is a patient; or
A person who has a claim against any portion of the estate of the declarant at his death at the time the declaration is signed; or
A person who knows or believes that he is entitled to any portion of the estate of the declarant upon his death either as a beneficiary of a will in existence at the time the declaration is signed or as an heir at law.
If the declarant is a patient or resident of a health care facility, the witnesses shall not be patients of that facility.
In the event that the declarant is physically unable to sign the Declaration, it may be signed by some other person in the declarant’s presence and at his direction. Such other persons shall not be any of those listed in Paragraph 7 above.
A Declaration may be revoked by the declarant orally, in writing or by burning, tearing, canceling, obliterating or destroying such declaration.
Forms are available from hospitals, medical societies, the Guardianship Alliance and most stationery supply stores.
It is wise to have both a Medical Durable Power of Attorney and a Living Will. The Medical Durable Power of Attorney gives someone (an agent) authority to make decisions; the Living Will sets forth one’s desires regarding life sustaining treatment and gives direction to the agent under the Medical Durable Power of Attorney.
Durable Powers of Attorney
With a Power of Attorney, a person (the Principal) appoints another person or organization (the Agent or Attorney-in-fact) to act on his/her behalf in all matters as designated in the document. A person (the Principal) must have capacity to understand the consequences of the document.
In Colorado, there are two Durable Powers of Attorney:
Medical Durable Power of Attorney includes medical and personal decision-making authority which may be limited or broad.
General or Financial Durable Power of Attorney includes decisions about money and property and can include other matters, except medical decisions.
“Durable” means the agency continues if the principal becomes incapacitated. To be durable the document must contain wording such as “this power of attorney shall not be affected by the subsequent incapacity or disability of the principal.
A principal may revoke any power of attorney at any time even if he/she is considered to be incapacitated by a doctor, caregiver or family. To make changes in a document, he/she must write a new one.
An agent may not override the principal’s wishes even though the principal may be assessed as incapacitated.“Nothing in this section or in a medical durable power of attorney shall be construed to abrogate or limit any rights of the principal, including the right to revoke an agent’s authority or the right to consent to or refuse any proposed medical treatment, and no agent may consent to or refuse medical treatment for a principal over the principal’s objection.” C.R.S. 15-14-506.(4)(a)
An agent has the same authority for medical treatment as a guardian. If another person is appointed as the guardian for the principal, the agent has priority for making medical treatment decisions unless the Power of Attorney is revoked by the court.
An agent is obligated to follow the principal’s instructions when making decisions. Unless the DPOA states otherwise, the agent has the same authority to make decisions which the principal would make if able to do so.
The appointment of a spouse as an agent dissolves on divorce.
It is a good idea to designate a successor agent in the event an agent is unwilling, unable, or ineligible to act when a decision is necessary. A successor agent has the same authority as the primary agent.
Powers of Attorney can be set up through an attorney knowledgeable about estate planning and health care issues or set up with preprinted forms which are available from hospitals, nursing homes, or the Guardianship Alliance.
Colorado law does not require a DPOA to be witnessed, however, it is recommended that there be two witnesses or have the document notarized.
For more information please call 303-228-5382, or send an email.
Unfortunately, at this time, scoliosis checks are not part of the suggested guidelines for Well Baby Checks. While pediatricians and family physicians provide a general look at your baby’s overall health, it may fall on your shoulders to monitor this. One of the best tools that you have is your camera. When you suspect that your child’s spinal growth is not normal, take pictures of your baby’s back on a weekly basis to monitor and compare through time.
Your parental intuition will make sure that your baby has the best options for his or her health. Follow your gut!
MGGC is a gentle, conservative, and perhaps most importantly, non-invasive treatment option to
address the three dimensional curves of progressive infantile scoliosis. There are no side effects when MGGC protocols are applied by a surgeon who has received proper, specialized
training.
In contrast, the complication rates for surgery and implantation of distraction hardware involve numerous risks and complications, including:
Rod breakage inside the body
Premature spinal fusion
Risk of infection
Potential for chest wall rigidity
Also, a study of 38 patients treated with dual growing rods demonstrates that the gains from lengthening decreases with each subsequent lengthening and over time. Cobb angle improves after the initial instrumentation but does not change significantly with repeated lengthenings. Spine May, 2011
ISOP advocates that conservative treatment with MGGC is a first line of defense, and that in most cases, surgery is a last resort.
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Mehta’s Growth Guidance Casting (MGGC) is a validated, non-surgical, potentially
curative treatment for progressive infantile scoliosis (PIS). PIS in infancy is considered the only potentially life threatening condition in the world of pediatric orthopedics because the curve(s) will keep pace at the rate of the child’s growth, which is fast the first two years of life.
Scoliosis is a three-dimensional issue which can be addressed gently in all dimensions with this specialized EDF (Elongation, Derotation, Flexion) treatment. Early Treatment with MGGC involves application of specialized plaster casts on a specially-designed frame. The number of casts needed will be determined as the curve is measured over time by your child’s physician.
The modified “under arm” casts were developed by American surgeons and were never included in Mehta Casting protocols. Under arm casts only have the ability to address curves below T-8. It is worth repeating that over the shoulder casts address all curve types at all locations.
Mehta casts must be applied by a trained pediatric orthopedic surgeon. The child is under anesthetized and placed on a pediatric size EDF casting frame. For more information about the frames required, please visit www.noeledfcastframe.com.
Back to Frequently Asked Questions for Parents
Early Diagnosis and Early Treatment are the core of successful treatment with Mehta’s Growth Guidance Casting (MGGC) for one simple reason.
The human body grows at an unbelievably rapid rate during the first two years of life. This growth rate will never be experienced again during human development, and it acts as the corrective force that allows spines affected with progressive infantile scoliosis (PIS) to actually grow straight three dimensionally. MGGC casts address spinal curves in terms of elongation, derotation and flexion.
