I brought with us the disc that had her most recent spine x-ray, but Dr. Grayhack decided to also do an x-ray of her pelvis as well, so that we'd have a baseline as we've never looked at it up to this point. We all assumed it would be fine.
But it wasn't.
Ella's left hip is two thirds out of the socket and her right hip is on it's way. Her hips are dangerously close to being completely dislocated.
This is not uncommon for children with SMA. With Ella's muscles being weaker, they aren't able to hold her joints in their proper places.
But this came as a huge shock to all of us, as Ella's hips appear to be fine from the outside and she has never complained of any pain in that area.
But a dislocated hip can become a problem down the road. It can become quite painful for Ella, and the farther out it goes, the more difficult it is to correct it.
Dr. Grayhack told us that since the hip will not go back in by itself (and will only get worse in time), the only way to fix the problem is with surgery. It's not a simple surgery, as both of her femurs would be cut completely and plates and screws would be placed to properly align the hip joints.
But there are risks with any surgery, especially for a child with SMA.
Children with SMA are at a much higher risk for respiratory problems after surgery that could lead to permanent problems. For example, she might become more dependent on her BiPap (she currently only uses it at night). Dr. Grayhack even used the word, "trach," which I'm hoping was a bit too extreme. But he did mention that she is currently very strong in the respiratory sense. But as time continues, she will gradually become weaker.
Ella will lose strength during her recovery from the surgery. She will have a cast/brace with a bar between her legs to keep her hips properly aligned during recovery, which will prevent her from doing her daily/weekly exercises that keep her strong. We don't know if she will regain that lost strength.
Ella will have periods of fasting before, during and after surgery. Children with SMA should not go more than four hours without nutrition, as their bodies start using muscle mass for energy. She would require IV nutrition during this time to prevent as much muscles loss as possible.
Dr. Grayhack told us that Ella would be in the hospital for at least four days, exposing her to countless germs that we're used to avoiding.
So that's it. We have a decision to make. Luckily we have some time to make that decision. Dr. Grayhack thinks that if we do the surgery, it should be done within the next three to six months. Ella has her SMA Clinic appointment with the rest of her team at Children's in May, so we will most definitely discuss the possibility of surgery with them.
For now, we'll pray. We'll pray for guidance in making this decision. We'll pray that Ella's hips do not completely dislocate. We'll pray that she remains pain-free. And above all, we'll pray that the doctors and researchers can find a cure for the thousands of SMA babies out there struggling right now.
