Monday at the Orthopedic Surgeon’s Office

Today we saw Ana’s orthopedic surgeon. We see him every 6 months to take an X-ray and make sure that her spine is still stable. Those of us in the congenital scoliosis community are familiar with the phrase “watch and wait”. This is the phrase that doctors use to describe the recommended treatment for very young congenital scoliosis patients. “Watch and wait” might not sound like much of a treatment, and in fact when I first heard it, I thought it sounded a lot more like torture than an actual recommendation for treatment. This prescription is just like it sounds: watch the spine, and wait till it changes. Congenital scoliosis can take so many forms. It can change quickly, or it can stay relatively the same over a long period of time. Generally when patients are so young, it is difficult to operate on the spine. Most people are aware that when a baby is born, their bones are like cartilage all throughout their body. The way that spine surgeons secure the spine after surgery is with metal rods and screws. This becomes difficult when the bones are soft, as they are not stable enough to hold the screws in place. When Ana was first diagnosed, her surgeon told us that the optimal time for surgery would be between the ages of three and four. At the time it sounded so far away that I put off worrying about it. Going into today’s appointment, I thought about the fact that Ana turns three in December, and that the surgery discussion could be on the table. However, knowing that she was at the appropriate age for surgery did not necessarily prepare me for the news we received today.

As we walked out into the hallway so the doctor could watch Ana walk, he told me that the degree of curve in her spine had increased by 20 degrees. It went from approximately an 80 degree angle, to a 100 degree angle. As soon as it came out of his mouth, I felt my heart drop into my stomach. I had to clarify and make sure that I was hearing things correctly, and he confirmed that it was correct. She has never had a change in curvature before, until today. Change in a spine that is already atypical is never good. We walked back into the exam room and he walked us through the surgeries needed. They would need to go in through the back first, and secure her spine in place using rods and screws. With a spine as complex as hers, they do not have the option to straighten it. After the first surgery heals, assuming everything goes well, they would go in again, this time from the front, taking a rib from her side and fusing it onto the front of the spine to create a sort of bone graft that would give the spine more stability. This is an extremely high risk surgery, with many things that could go wrong. The two biggest risks are complete paralysis, and infection. He said there is a 20% chance that she could lose all function in her legs as a result of this surgery, but the greater risk is the possibility of infection. He said that the hardware they put into the back would make the curve in her back even more pronounced than it already is, and since her body is so small, for some children, the hardware irritates the skin from the inside causing infection. If that happens they have to remove the hardware which can be detrimental, as it would destabilize the spine. The pro’s of doing the surgery soon, would be that we would stop the movement in her spine and try and preserve some leg function. He did say that at this young of an age, the spinal cord is more likely to heal and preserve some functionality, assuming that everything goes well.

Sitting there listening to the doctor explain our options, it took everything I had not to burst into tears right in front of him. I kept it in until he left, but walking out of Children’s Hospital, the tears started to come. I was holding Ana as I was walking out and she asked me what was wrong. I told her that mommy was just sad. She looked at me and said, “Mama, do you need an Ana hug?” I said that I did, and she wrapped her little arms around my neck and hugged me all the way to the car. When I put her in her car seat she asked if I was happy now and I said yes. She looked at me inquisitively and said, “But your eyes still look at little sad”. I agreed that they probably did, but that I would be okay.

Ever since Ana came into our lives, I learned very quickly that she was a much stronger spirit than I. I think that God gives us all challenges for a reason, to help us learn, grow and become better people. As I walked to the car with Ana’s arms around my neck, I realized the irony of the situation. I am not the one who will be undergoing multiple surgeries, yet she is the one comforting me. I only hope that one day I can become the mom she needs me to be. The mom that wipes her tears of pain, but also pushes her to try her hardest in recovery. The mom that listens to her vent her frustrations with her physical difference, but also helps her see all the many blessings in her life that she can be grateful for. The mom that comforts her when she gets down on herself, but also shows her the path to self love and acceptance. i’m so grateful that I was blessed with this little angel, who is helping me to be a better mom and a better person everyday.