The five emotions of raising a child with infantile scoliosis

Avery, who has infantile scoliosis, with his brace

One night, while doing our son’s usual bath routine, I saw what looked like a hump on his back. Avery was 6 months old at the time. At first, I thought that it was just something I was imagining, but the hump never went away. In fact, it seemed to get worse. When Avery was 13 months old, he was officially diagnosed with infantile scoliosis, a rare form of scoliosis that occurs in children under 2 years of age.

The first hospital we were referred to would not even consider treating Avery until he was at least 18 months, and that was not a guarantee, so after doing some research, we came to Boston Children’s Hospital for a second opinion. We were referred to Dr. Michael Glotzbecker, one of the surgeons in the Spinal Program at Boston Children’s Orthopedic Center that specializes in early onset scoliosis.

After a clear MRI and more x-rays, Dr. Glotzbecker recommended EDF (Elongation, Derotation, Flexion) casting treatments. He told us that our son would be wearing a plaster cast that covers his torso to correct the curve of his spine. The casts must be changed every two to three months in an operating room while Avery is under anesthesia. Having a child in a cast can be a life changer, as it is not an easy process. The experience has brought on so many emotions for me – both good and bad.

Sadness

The first time I held Avery after his first procedure, I wanted to break down and cry. I could not feel the softness of his body in my arms. I could not rub his back to calm him as he was crying, just like I did pre-casting. My heart sunk, I felt like we were being robbed of these little moments that we try so hard to cherish while our children are still little. Of course, we can still hug him and cuddle him, but it’s not the same feeling. His body doesn’t melt into ours. Instead, all we feel is a hard piece of plaster between us.

During the first cast break, I noticed that Avery had been extra cuddly, and it took a minute to realize that it was because when he has the cast on, he cannot feel our hugs either. It broke my heart to think that. These days, all we long for is to be able to hold and hug our child the same way other parents can do with their children.

Watching Avery go under anesthesia every couple of months will also never get easy, no matter how many cast changes he goes through. Just thinking about the moment when he is being put under brings tears to my eyes.

Anxiety

Avery will not get another x-ray until after a year of casting, so until then, we just get by with hope and prayers that the casts are doing their job. During the cast breaks, we try so hard to avoid looking at his back and analyzing it. The first cast break, we made the mistake of staring at his back and even comparing it to photos. It drove us insane, and at one point made us feel discouraged that maybe it wasn’t going to work. Before we knew it, the weekend was over, and it was time to head back to Boston for cast No. 2.

Avery, who has infantile scoliosis, and mom with Dr. Glotzbecker.
Avery and Christina with orthopedic surgeon Dr. Glotzbecker

Loneliness

No matter how much we explain this experience to others, unless they have been through it before, they will never understand. When people hear that Avery has scoliosis, they automatically think of the more commonly known form that develops in the adolescent years. They tell us about how their second cousin’s best friend has scoliosis, and about the chiropractor that is treating them, along with all the herbal medicines they use. Infantile scoliosis is very much different, in so many ways, and needs to be treated by an orthopedic surgeon that is specially trained in the casting procedures. If not treated early and properly, the condition can progress and can even become life threatening.

When people hear that our son must wear a cast, they think it is a brace and we can remove it anytime we want. If only it were that easy. Just the application of the cast alone is a complex procedure, and believe me, the rest of this journey is not any easier. People who have not been through it just don’t understand, and don’t see what the big deal is. It can make it very difficult to talk about it with them, which in turn, makes us feel alone in handling it.

Strength

We have adjusted to the little things, such as finding new diapering techniques, sponge bathing instead of regular baths, and our least favorite – avoiding the outdoors in the hot summer months, as the cast can cause overheating. We sometimes must plan family activities around cast breaks, or make sure the activity is what I call “cast friendly” so Avery can enjoy it, too.

These are just some of the many sacrifices a family must make when they have a casted child. The hardest adjustment, though, was finding the strength to handle people’s stares, whispers and questions while in public, as they sometimes treat him differently once they see the cast.

Pride

Avery has had to make his own adjustments, as well. He has had to learn new ways to get up from a sitting or lying position, learn to crawl, walk and run with the cast on, and find new positions that are more comfortable for him to sleep and play. He does not let his cast get in the way of anything he does. Avery could spend all day running around and playing just as hard as any other child his age. Children are very resilient, and I must say he has been a little warrior through it all so far, and we couldn’t be prouder of him. Despite all that he is going through, he is probably the happiest child you will ever meet, always with a smile on his face and arms open for a hug. He has a big heart, full of lots of love for everyone he meets. He just amazes me every day.

As I have said before, it is not an easy journey. We’ve gone through a rollercoaster of emotions during Avery’s treatment for infantile scoliosis. While others may not understand some of the pain and heartache we are experiencing, all we ask is for kindness, support and some compassion during the difficult times. And when you see Avery with that smile on his face, please don’t be afraid to smile back, because it is that smile of his that makes every part of this experience worth it in the end.

Avery, who has infantile scoliosis, sitting in his mom's lap

Read Christina’s personal blog about Avery’s scoliosis journey.

Learn more about the Spinal Program at Boston Children’s Hospital.