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Healthy You

Dancing Towards Perfect Posture: Hailey and Christi’s Story

Tuesday, February 09, 2016 9:57 AM

Age 2 is a time of growth for toddlers, with plenty of physical activities and brand new experiences. While most children are dealing with bumps and scrapes, Hailey Gamboa was going to her first plaster casting session. After her family noticed problems with her posture during infancy, they were referred by Hailey’s pediatrician to David Roberts, MD, Orthopaedic Surgeon at the NorthShore Orthopaedic Institute, who diagnosed her infantile scoliosis and began working with her family on a long-term treatment plan.

Christi Greenwood-Gamboa, Hailey’s mother, was there every step of the way. In her Q&A, she discusses how Hailey’s care team made each of Hailey’s castings a positive experience, and what’s next for Hailey after her last casting.

When did you first start feeling that something was off in Hailey’s posture? Was there anything in particular that helped you decide to see a doctor?
We didn’t really notice anything until a few months after Hailey began walking, which was at around 18 months. My husband would always say that she walks funny, but I would just brush it off thinking that she’s just a toddler who just began walking; of course she would walk funny. But then we would notice that every time she was standing still, she would always lean into one of her hips and kind of stick her hip out.

We googled her walking and leaning habits, and found websites mentioning infantile scoliosis. It did list some other early symptoms such as that an infant may always lean to the same side when sitting up. Thinking back, we realized that Hailey did do this as well, which was another thing we brushed off at the time since she was just a baby learning how to sit up. The websites also mentioned that curves under 30 degrees tended not to be progressive, and if under 20 degrees may resolve themselves as the child grows.

Then we started looking at Hailey’s back and observing her walking and standing posture. You could tell that her back looked crooked, but it seemed pretty mild, especially when we compared it to some of the pictures on the websites of more serious cases. We knew that she most likely had scoliosis, but we figured it was just a small curve (probably under 30 degrees was what we were anticipating). It really did not look that bad, and she was very active; able to run and play with her sister. We decided to mention it at her 2-year check up with her pediatrician, which happened to be coming up within a few months.

What was your response after learning of Hailey’s diagnosis? It’s tough thinking about next steps after getting that kind of news.
When we found out that Hailey’s spine had over a 50 degree curve, it was very surprising to us. We had no idea it was that bad. I knew that curves over 30 degrees had to be treated because if they are not, they can keep getting worse. Not only that, but large curvatures of the spine can also lead to issues with other internal organs. So we were very concerned and knew that we would have to undergo treatment for Hailey as soon as possible.

Hailey’s pediatrician referred you to Dr. Roberts. How did you feel after meeting with him about Hailey’s diagnosis and treatment options?
We definitely felt comfortable with Dr. Roberts from the start. We knew he specialized in scoliosis so we always knew we were in good hands. On our very first appointment with Dr. Roberts, he took an X-ray, and was able to talk to us about the results and her diagnosis, along with treatment options. He talked about braces and that they tended to be pretty ineffective since children may not wear them as often as they’re supposed to or do not wear them correctly. He said if we decide to go with braces for treatment, that it is possible Hailey will need surgery to correct her spine later in life.

He then talked to us about the casting treatments. We did not have any previous knowledge of this type of treatment. He said she would be wearing a cast for up to two years, and that the cast is not removable (other than when they change it every 2-3 months as she grows). I was honestly very worried at the time because it seemed like such a huge adjustment. I was worried that Hailey would be extremely uncomfortable, would not be able to be active and experience a normal life or would even have trouble making friends because of the cast. But this seemed like the best treatment available because Dr. Roberts said the success rate is very high with the casting, and that if successful, Hailey will not need surgery later on. He also assured us that Hailey can do anything while wearing the cast, and that her only limitation is that she has to keep the cast dry. This did make me feel a little better about it, but I still had concerns and was still worried that Hailey would have a very rough couple of years in the cast.

We decided to think about the two options he had mentioned for a while before making our decision.

We were kind of pressed for time though because Dr. Roberts said that it is ideal to begin treatment before the child turns two years old, and Hailey had already turned two. He wanted to begin treatment for Hailey as soon as possible.

It only took a day or two (along with some research and cast pictures) to get all the family on board with the casting treatment. Hailey went in for her first cast only a few weeks after that first appointment.

How did you explain things to Hailey about her treatment throughout the process? Were there specific tools or resources that helped?
Before Hailey got her first cast, we would just tell her that she was going to get a special jacket. We tried to make it exciting for her by making her feel special. We asked her what color she wanted, and showed her pictures of other kids wearing the cast. So when we went for the initial cast, she really wasn’t too upset about it.

Some resources:

How did Hailey respond to her first casting?
The first cast was the only one that took some adjusting for Hailey. When she first tried walking after having the cast put on, she didn’t know where her center of gravity was. It only took her a day or two though to get used to walking, running around, and even playing in her cast. One other thing she struggled with at first was being able to get down to a sitting position on the floor to play, and then to be able to stand back up. But even this took her just a couple days to figure out. She was playing just as actively as she always did within two days of having the cast put on.

After each additional cast was put on, Hailey didn’t need any time to adjust to it. She would just go into the hospital, go through the procedure of getting the new cast put on, and then she would go home and go about her day as if nothing happened. She would even come home from the hospital excited about her new cast, and show it off to her sister and other family members.

What were some of the ways Hailey’s NorthShore care team made the fittings positive experiences for your family?
The team at NorthShore really has been great. Dr. Roberts was very reassuring when we were making the decision about going through with the casting treatments. He and his nurses also made the castings fun for Hailey by letting her choose her colors, and always making her new casts special by adding sparkles or stickers. One cast even had rhinestones glued all over it because Hailey asked for diamonds on her cast.

The nurses in pediatrics also made it very positive for us by remembering us when we would come in, and asking how treatment was going. They were great with Hailey too by making the experience more fun for her. These things make such a big difference. It makes it so much easier to come in for the procedure knowing how welcoming and caring everyone will be.

What advice would you give to parents who are beginning a long journey like this with one of their children?
The most important advice I can give is that if you think your child may potentially have scoliosis, to go in and get it checked as soon as possible. Beginning the casting treatment sooner may decrease the amount of time for wearing the cast. Even with Hailey, just waiting those couple months before taking her in to Dr. Roberts probably caused her treatment to be longer because we didn’t start casting until after she turned two.

Also, the casting is harder on the parents than it is on the child. Hailey had no trouble adjusting to the cast, and never felt different from any other kid. In fact, other kids didn’t even know she was wearing a cast because it was hard it see it under her clothes. She was able to do anything she wanted really, besides getting her cast wet.

And I only say it’s harder on the parents because we are the ones who worry and have to make some adjustments to our lives (such as how to give baths, and keep the cast clean). But overall, the entire experience has been very easy. Hailey is now wearing her 11th and final cast, and we know we made the right decision to go with the casting treatment.

The castings haven’t stopped Hailey from being active! What are some of her favorite things to do?
Hailey’s favorite thing to do is to dance. She is currently in a ballet and tap class, and she is going to be in a dance recital at the end of the year. She is very into sparkles and looking like a princess, so I think this is why she loves ballet because she gets to wear the pretty ballet dress. She loves many other things as well including ice skating, going to the playground, painting, riding her scooter outside, and even going on rides at Six Flags. I do not think that Hailey has ever felt limitations from wearing the cast.