“Strength does not come from physical capacity. It comes from an indominant will.”
Mohandas K. Gandhi (1869-1948)
My son Finn is the very essence of the word strength. He is also determined, witty, and charismatic. For in his three short years he lives his life with the wisdom of an old soul. He has struggled and he has rallied. His life has not been one of ease but he has blossomed into a thriving, energetic young boy.
Finn was born into my arms on May 31, 2006. I had struggled with Polyhydramnios in my pregnancy that has ballooned my stomach to twice the normal size of a single pregnancy. I went in weekly for the last 6 weeks of my pregnancy for fetal monitoring and at 38 weeks my midwife and physician decided it was time to induce labor. Finn’s delivery was uncomplicated and very natural. We had not known if he was a boy or girl and were overjoyed when the announcement from my midwife was that he was a boy. My daughter Mia, then almost 4 years old, attended the birth and was the proudest big sister I had ever seen. I did notice that Finn was bruised on one side of his face and that he had some difficulty opening his left eye, also that his left eye sat higher on his face than his right eye. I was told that he was a little shifted from the delivery and once the swelling went down all should be normal. His Apgar at 1minute was an 8 and at 5 minutes was a 9.
Hours into Finn’s arrival his muscle tone decreased and he had difficulty with his breathing. He was grunting and was taken to the nursery for oxygen. After three days in the hospital he was released and we went home to begin our life as a family of four. Within days I noticed that Finn sharply tilted his head to the left with his chin sitting on his right shoulder. His position looked so uncomfortable but it seemed very natural to him and when I repositioned his neck he would again rotate it to the side. The next thing I noticed was that his eyes did not move correctly. Even though he was a newborn he had absolutely no eye focus and stared very blankly never even trying to make eye contact. Even weeks later his left eye still sat higher on his face and his face was very asymmetrical. The left side of his face also drooped with poor muscle tone and without expression. His feedings were extremely difficult and he could not breastfeed well. On top of sucking problems, milk would spew from his nostrils if he was not held in an upright position.
I called into Finn’s pediatrician at 6 weeks of age and told her my concerns of his held tilt and vision. His pediatrician said that the head tilt was torticollis and not uncommon and that the vision problems would resolve as his eyes matured a bit. She said that she would take a look at his 8 week appointment. By his 8 week appointment my concerns and worry were through the roof. I just knew that Finn was not developing normally. He didn’t sleep, he had great difficulty nursing and I had to feed him pumped breast milk from a bottle, and he surely couldn’t see well. All of my concerns and worries were almost dismissed and one of his pediatricians told me to go home, stretch his neck, feed him from a bottle and not worry about his eyes. I chased after her as she left the room and went into her office. I insisted she write a referral for physical therapy and decided to make my own appointment with an eye doctor.
Finn began physical therapy for his torticollis within a couple of weeks and we went to see a ophthalmologist when he was around 3 months old. The ophthalmologist acknowledged immediately that Finn had an eye issue. She was concerned also that his eyes did not seem to abduct out. She was correct. Finn went in for his first MRI at the local children’s hospital. The results did not show any nerve damage or anything else. It was just a mystery. The ophthalmologist sent Finn to a neuro ophthalmologist for a second opinion. The neuro ophthalmologist looked Finn over for about ten minutes and declared he had Moebius Syndrome. Moebius Syndrome is characterized by a complete absence of cranial nerve 6 and 7 movement along this a variety of other symptoms. There is no testing for it. It is just diagnosed with observation of a set of symptoms. I didn’t think Finn had this from day one of his diagnosis and it is clear now that he doesn’t have Mobieus Syndrome because now, Finn has facial movement on the left side of his face. Mobieus Syndrome doesn’t ever get better. The neuron ophthalmologist then referred us to a pediatric neurologist who recommended repeating the brain MRI to include the brainstem and cervical spine. The MRI showed subtle, possibly abnormal, structural abnormality based on an inverted V-shape of the fourth ventricle but no other abnormal findings.
So, we moved on. I came to the realization that Finn’s greatest issues were not his facial asymmetry or his horizontal gaze palsy or his feeding difficulties. Finn’s greatest issue was the torticollis. The torticollis was being aggressively treated yet we did not seem to be getting anywhere with the treatment. When Finn was about 5 months old I had noticed that when I carried him he felt very shifted to his left side . I asked his pediatrician about it and she stated that it was his muscle development and that he was developing more on his left side. This did not sound correct to me, but what did I know. We moved along and Finn was in vision therapy, speech therapy and physical therapy. He didn’t sit up well, he did not crawl and he screamed at night like I was torturing him. I decided to take him to Shriner’s Hospital in Tampa Florida for another opinion. When his appointment time came, he had learned to do an army crawl and he pulled with one arm and pushed off with his big toe. He was also doing a little better job of sitting.
Finn’s first Shriner’s appointment was when he was 11 months old. Sure enough, he was diagnosed with scoliosis. The findings were: T8 to L4 42 degree levoscoliosis. The AP and lateral C-spine x-rays showed no obvious bone abnormalities and the AP spine and pelvis x-rays showed a left thoracolumbar curve of 42 degrees. The hips were well contained and the lateral spine x-ray showed no obvious bone abnormalities and no congenital vertebral anomalies. I was terrified. We were referred to a geneticist to put all of the pieces together because Finn did not have all the classic characteristics of Mobieus syndrome. We were advised to watch and wait to see if the scoliosis progressed. I had absolutely no idea what a beast infantile scoliosis could turn in to. I look back at how naïve I was and how unconcerned Finn’s medical providers seem to be. I just had no idea…
Finn had his genetics appointment and there were no additional findings. At about this time we also began to see a chiropractor, because his MRI had ruled out structural abnormalities. The chiropractor studied Finn up and down. She was determined to make a difference in his life. She worked and worked on his head with cranial sacral therapy to reshape his cranial asymmetry. Little by little we began to see the left side of his face move. Within months of his chiropractic therapy he was smiling a full, normal, toothy smile. He had never been able to move his mouth and face like this and we were so excited and so very hopeful.. I look back on Finn’s first smiles and I think that this was really the first time he had shown some expression of happiness. He had screamed and cried during the night from the time he was born. I knew he was a fighter. His smile told me that he was trying to burst out of his immobile shell.
Finn struggled through the next few months. His head was always going the wrong direction or no direction at all. He was not developing within his normal range and his developmental delays were more noticeable than ever. All of our little friends of the same age were walking, talking and playing but Finn really struggled just to move a few feet. He had trouble rotating his head and that was the only way he could see what was going on around his sides because his eyes did not turn out to look. He could only look forward. We worked so hard. I gave him a massage every night. I rotated and stretched his head. I walked with him, I talked with him. I loved on him like he was all I ever loved. We attended all of his scheduled therapies. He spent so much time just trying to make his body behave as physically normal as possible that he learned nothing else. He just wanted to move!
At 17 months old we returned to Shriner’s Hospital in Tampa. Finn’s AP of the spine showed a left thoracolumbar curve of 60 degrees. The scoliosis had definitely increased from previous films. The vertebral and intervertebral disk spaces were maintained. The bony structures of the pelvis were normal and the femoral heads were within their perspective acetabula. Shriner’s in Florida recommended a brace. They also discussed with me the possibility of needing a distraction rod in the future. I asked if there was any other treatments available for infantile scoliosis. I was told that there were none. Bracing and surgery were the only opinions, or do nothing. Finn was molded for a brace and told to return in 4 weeks. We returned for the brace but there was a problem with getting a good fit and giving Finn correction so Orthotics & Prosthetics wanted to do a Risser cast for a brace mold. They did a mold and made the brace, this was another month, and when that brace was made it did not fit correctly either. So, Finn was molded again with a Risser Cast and a brace was made from the cast. Shriner’s was satisfied with this brace and we were sent home and told to return in four months because they wanted to monitor him because they stated that he may require surgical intervention in the future He measured 40 degrees in the brace.
We went home with that brace. He absolutely could not support his body or his neck in the brace. He laid on the floor mostly and refused to try to do anything. I knew this was not going to work. I had done a little research on my own when the braces were being made and they had told me that he would possibly need surgical intervention. I remembered that there was a method of serial casting that was being practiced at some Shriner’s Hospitals but it was not practiced in Tampa. I went back and found that site. Finn will probably thank me for the rest of his life that I did. It changed his life. ISOP (Infantile Scoliosis Outreach Program) was the only brace that mended my son. It began to heal him the minute I joined the group.
Now, just to give you some background on myself. I am natural to the core. I feed my kids fish oil, pro biotics, and vitamins on a daily basis. They are allowed their share of junk food but eat a natural whole foods diet. My home is as natural as possible and we do not use pesticides or harsh cleaning chemicals. The idea of putting rods in my baby was very uncomfortable to me. I believe in natural health and homeopathic cures when possible. I was really scared to commit to EDF (Elongation, Derotation, Flexion) serial corrective casting, but it was my son’s best alternative to very invasive, repeated surgeries. I worried about if the cast would be uncomfortable, I worried about if he would be to hot in the Florida sun, I worried about what I would do if Finn chocked. I worried about how I would bathe him, how would he do being unable to get wet at the beach or pool. Could he walk in it, could he run in it? Could he just be a little boy in it? Well, I thought about all of this and really looked at my options. He could barely get around as it stood because he was so crippled over with torticollis and low muscle tone. I read and I studied ever story. I knew that Finn did not have a very good chance to get 100% straight because of his degree of curvature, rotation and his age but I decided we just had to try. I made an appointment with the closest physician that was practicing the Mehta Method. This physician was not part of the Shriner’s network but we decided to give him a try anyway. We went to the appointment and the physician agreed to cast Finn. The next morning Finn went in for casting. About an hour after Finn went into the OR the physician came out and said that he could not cast Finn. He said that I should take him to get growth rods immediately. I was absolutely devastated. I lost all hope. I cried for days. When I returned home with Finn I posted on the ISOP support group that Finn had been unsuccessful in our casting attempt. I learned that some doctors are not following the exact recommendations of EDF casting and the Mehta Method. He was modifying the plaster jacket by not using shoulder straps in all cases. He did have kids with low curves that were achieving correction but this modified method without the support of shoulder straps was not going to work for Finn and his high thoracic curves. He just had too many neck issues going on and he needed the shoulder straps to hold his shoulder area and chest cavity in place. I was encouraged by another mother on the group to get another opinion. The mother suggested the Shriner’s in Chicago. I gave them a call and sent all of Finn’s medical documentation up to be reviewed. They called and told us to come on up. I was so nervous and excited. We went ASAP.
On our initial visit Finn’s x-rays showed that he had progressed to nearly 90 degrees. It had been less than four months since our last x-rays and the curve was progressing like wildfire now. He could hardly stand at this point. His overall function was almost as bad as it had ever been. He just could not develop like he needed to because all of his energy and focus was on trying to support his body. The attending physician noted that he was very flexible and in traction x rays he looked much better. The physician said he would try to cast him the next day. I was not going to set myself up again for disappointment so I just did not get very excited. The next day Finn was casted. After the casting, his physician came out and told me he “looked good”. Looked good I thought, oh my goodness, could this be true? I was beyond words. I was crying with relief. He was casted down to the mid 30’s. This was achievable because the doctor treated my child individually, had EDF experience and knew the importance of shoulder straps for curves above T-9.
Finn came out of recovery and we wheeled him down to his room. His cast was taped and trimmed. I picked him up and put him on the ground. He was a little disorientated and a bit uncomfortable and unsure of what had just gone on. He held his body tall and strong for the first time in his life. He laughed, and he moved, and he tried to walk. I packed him up that afternoon and went back to Florida. With in the next few days Finn became very comfortable with his new accessory. Once he adjusted to the weight of the cast he was full steam ahead. Finn was amazing. The cast allowed him to stand without slumping. He could walk and move freely. He immediately started doing things I had never seen him do. Finn was a new kid. It was the beginning for him. It was the beginning of his new life where he had an opportunity to learn without pain, where he had the opportunity to be the same as his peers and run with the wind, and where he had the opportunity to focus on something else than just trying to standing up.
Finn has received good correction in his casts. He just went in for number 7. I have never been one for numbers or degrees. I have always known that Finn will most likely never get full correction like some of the younger kids with less severe curves. I choose not to ask what his numbers are. I know he is still above 50 degrees but he is well below 90 degrees. I also know that he gets down to about 28 degrees in his cast. I just really don’t need to know numbers though. I am not focused on that. I am focused on the new chance for life that Early Treatment w/ properly applied EDF casting and the Mehta Method has given my child. I am concerned for his overall development. I want him to develop in all the ways his peers have had the opportunity to develop. I just want Finn to have the chance of a the most normal life possible, one that is free of pain and full of opportunity to grow, develop, and explore in this world that is so full of life. And you know what??? He is, and the reason he is full of life is because of Mehta casting and the absolute best medical team at the Shriner’s Hospital in Chicago.
Finn continues to achieve success. He just turned three and is doing remarkably well. His vision has improved and he has learned to rotate his head to see what surrounds him. His facial palsy is almost nonexistent. He runs, and he plays and he has the most inspiring, infectious laugh. He is always in trouble for getting into something or climbing on something. He is the pillar of strength and determination. At the end of the day I know that he most likely will require surgical intervention but the casting has given him the opportunity to grow a little more , develop a little more and explore life a little more. I could not ask for anything more.