May 19, 2017 "Hip Surgeon Consult #1"

Our appointment today was a little confusing. We were scheduled to see Dr. Narotam, pediatric orthopaedic, to get fitted for bracing. Last week he consulted with Dr. Cuomo, pediatric orthopaedic surgeon, about Rayden's case. They decided that bracing really wasn't the best option after all. Dr. Cuomo believes that bracing the hips might give us a better shape to the socket but it will not give us a better shape to the thigh bone. So it might look like it's sitting in the correct position but she believes it will not solve the problem. In order to get the hip to actually sit better in the socket Rayden would need surgery. Therefore Dr. Narotam called me to let me know that there had been a change of plans. Rayden would not be getting fitted for a hip brace. Instead, we would keep our same appointment and he would pull Dr. Cuomo in to consult with us. The only problem with the scenario is that Dr. Cuomo is extremely busy. She didn't really have time to leave her scheduled patients to come and talk to us. She advised Dr. Narotam of her plan so he could relay it to us.

Rayden's right hip is 25% uncovered by the socket and his left is 50% uncovered. His socket bones are not curved around the hip joint. Instead of being curved like the letter C, Rayden's hip bones are actually tilting in an upward angle like the letter V. This means that the more he walks, the bones will gradually drift upward and OUT of the socket. Dr. Narotam doesn't believe it will happen all of a sudden, but he said there is no doubt in his mind that this WILL happen. They believe that surgery on Rayden's hips is something that needs to be done sooner rather than later.

The proposed surgery is called a Femoral Osteotomy. They
would cut the femur (thigh bone) and point it more inward so that the head of the femur goes right into the middle of the socket not up and out. Then they would re-attach the bones with a plate that will hold the bone into an 'L' position. Hopefully the hips would then start to grow CURVING around the joints instead of going upward like it is right now. The recommendation is to do both hips at the same time because he would be off of his feet for several months in a spica cast from the stomach down.

After searching through old x-rays, Dr. Narotam found a hip x-ray from almost exactly a year ago. This film revealed that Rayden's hips were in the same position then; meaning they haven't really changed in a year! So their consensus is to actually wait another 4-6 months giving Rayden more time to advance in walking. If it hasn't gotten worse at the next visit then we will continue to watch it. Maybe Rayden actually DOES have enough strength in his muscles to stop the bone from popping out of joint...

This all sounded so barbaric to me! Like they were going to turn my baby into a bionic person ("we can re-build him"). I'm aware that things like this have to be done, but as I sit and ponder on them actually cutting his legs in two it breaks my heart! Do we really allow them to do this to him? Is it what he needs to be able to walk in the future? Dr. Narotam says they only do this surgery on people that have the potential to be life-long walkers. They want to preserve his ability to walk and keep him out of a wheelchair. Without this surgery it would be so difficult for him to walk. He would expel so much energy that he would tire out easily causing him to give up and lean toward a wheelchair. We certainly don't want to crush his ability to walk... God, please give us the answers. Ultimately the parents have to give permission to do any surgical procedures. Doctors can make recommendations but they don't really make the final decisions. It's so hard to know what to do. Things we do now can help or hinder him in the future. Yes, I lean on God for my strength, knowledge, and answers but it is extremely hard not to worry.