The moment Maggie was born we knew something was wrong. When the doctors quickly whisk your child away and whisper in a corner, things are probably not going well. She had severe torticollis on the right side of her neck, causing her face and ear to swell. While in the hospital she had a quick x-ray, renal ultrasound and echocardiogram – fortunately her heart and liver were functioning properly, although the x-ray revealed a 30 degree spinal curve.
Maggie was a small, full-term baby and a poor eater (Breastfeeding did not work). Even on breast milk she developed reflux, and gained weight very slowly. It’s funny looking back on those early days as her nutrition was our paramount priority. We even took her to a GI doctor and worked tirelessly to get food into her. While still very small (5 years, 27 pounds), our focus has changed significantly.
Pretty quickly after her birth we were at the orthopedic clinic at our local Children’s Hospital. The doctors said that usually infantile scoliosis resolves by itself in a few months. After a year the curve was at 50 degrees – Maggie was becoming noticeably asymmetrical. Our appointment schedule shifted to every 2 months, with a chest x-ray to assess the curve. Six months later, the number was at 60 degrees – the diagnosis was progressive infantile scoliosis. It was time to start treatment…
Maggie’s curve is very high in the thoracic region of her spine – a very hard place to treat. In addition, an MRI revealed no rib or vertebrae deformities. Her spine just wanted to curve. The recommendation was to start with a Risser cast to shape the spine through pressure on the ribs. It’s hard to explain the horrible feeling that washes over you as a parent to know that you “opted-in” to a bulky, hot and itchy torso cast. We took the week prior to the casting as a perfect excuse to go to the beach. Seeing Maggie in the cast after the procedure brought me to tears. Waking up from anesthesia as an 18 month old kid now stuck in a cast that weighs one third of your body weight was more than I could handle. Maggie handled it way better than I did – she was active, mobile, and more or less unaffected. Her spine also, was unaffected. Each subsequent visit to children’s revealed a small increase to the curve: 62 degrees, 66, 72, 75, 79, 81, 82, then 90 degrees. Maggie was amazingly not showing any ill affects of her curve; no shortness of breath, fatigue, or trouble walking. Still, casting was not working…
Our doctors introduced us to VEPTR, an extendable titanium rod which is implanted in the back to manage a spinal curve while a child is growing. Sounded like the holy grail to us. “My daughter gets to get out of this cast? Swim? Take baths? And the results are very positive??” Sign us up. Maggie was around three and a half by this time with no relent to her ever-progressing curve. “There’s another option as well” our doctor told us, ‘It’s called halo traction”. Horrified, we could hardly even comprehend the desperation required to engaged in that medieval torture. “You seriously have to drill a halo into her head? Then hang her from a pulley in a walker or wheelchair she can’t get out of???” It literally could have been one of the worst things I could imagine. “But it’s easily reversible, and isn’t major surgery.” said our Doctor. We though about that for 10 minutes and concluded: VEPTR it is….
Maggie’s surgery was scheduled a couple days after her fourth birthday. We told her staying in the hospital would mean as many movies as she wanted – she was very excited. The surgery took three hours, three nerve-wracking hours, full of pacing, staring at each other, and mindlessly surfing the internet. She metabolized the anesthesia very quickly, and woke up fast and disoriented in the PICU, without us there. When we were finally allowed back, it took my wife a long time to calm Maggie down. Sleeping in hospitals is the absolute worst: two days in the PICU, and 4 more in the recovery room put a huge strain on my wife, who would not leave. Maggie’s condition was sub-par, she was unable to move her right arm (fingers moved though), her pain was high, and we were discharged with her hardly walking. A slow couple of weeks saw her going back to preschool an hour at a time, and some increased right arm movement. Then everything went bad, very bad…
Maggie suffered an episode at school that put her in a great deal of pain. She stopped moving her right arm, had a great deal of asymmetrical sweating (only the right side of her face) and was unable to do much but sit on the couch. We thought it was a strain or a pain spike and that a good night’s sleep would make it better. It didn’t, her condition worsened. She was lethargic, scared, and extremely timid – her face resonated pain. Our doctors did not know what could be causing it, guesses included a muscle tear (they had to cut through many layers of muscle on the right side to seat the VEPTR), an infection, or nerve damage. We continued to hope that rest and minor physical therapy would improve her condition, it didn’t. This went on for a month, until her sutures burst on her back – infection was now the known culprit. Surgery was scheduled to clean out her VEPTRs – it was performed the next day. She was put on antibiotics and we were sent home. Her condition slowly but steadily improved and we took her off the antibiotics. After about a month, constant monitoring of the wound did reveal that the new sutures started to pull apart again, we went back on the antibiotics. The wound healed as did Maggie’s condition – she regained full movement of her arm, along with her bubbly personality. She was however on 3 doses of antibiotics everyday, with no real exit strategy other then pulling out the rods.
After the initial VEPTR surgery, Maggie had three extension surgeries. They had no positive effect. Her spinal curve was over 95 degrees – I think the doctors must stop giving you exact numbers at this point, as they started telling us “Mid to high 90’s”. That desperation I talked about above was now on us in full force. We started getting our minds prepared for the ‘medieval torture devices’ – it was the only reversible option left. We formulated a plan: We took Maggie off the antibiotics, and would let the infection tell us that it was time for the rods to come out and the halo traction to go on. The infection didn’t come back… Great, now we get to choose when Maggie goes in the wheelchair. We tried one more extension surgery with no improvement and quickly scheduled the halo traction surgery….
Maggie would be getting her rods pulled out and a halo attached to her skull with eight screws. I did not cry when I saw her after she woke up from anesthesia. Her halo was big and bulky, with a large metal hook to attach to the wheelchair/walker’s(forthwith referred to as ‘hardware’) pulley system. Fortunately, there was no need for the PICU, and we went straight to the recovery room. Three more nights in the hospital, but Maggie was doing really well – both in terms of her pain and her tolerance for the hardware. Two days after surgery she was running down the halls of the hospital in her walker, jumping and doing tricks on the pulley system and making friends in the playroom. I’m lucky I recently upgraded my Subaru Impreza to a Ford F150, I don’t know what we would have done trying to move the hardware in anything but a pickup. Due to the fact that we currently have only a few weeks of experience with halo traction, I’ll end on this positive note: After one week of halo traction, and only two days of the final traction weight, Maggie’s curve has gone from over 100 degrees to 66…
You can see/grab some pictures from the Caringbridge site I set up for Maggie’s last two major surgeries: http://www.caringbridge.org/visit/maggiecondie/photos
At the end of two months, Maggie’s curve is down to 50 degrees. It amazing for us to see some treatment actually have a positive effect. I feel horrible now that we even went through the VEPTR surgery, probably a regret I’ll have for the rest of my life. After the halo came off we had Maggie fitted for a new brace. One that has a neck brace along with a body brace – Maggie has been wearing that for about 23.5 hours per day. We’ll get another X-ray in a month to see how her spine looks, but the traction/bracing has given us new hope that we can keep her growing for a years to come.