On June 10th of 2008, after a very rapid labor and delivery I gave birth to the most beautiful baby boy we named Hayden Scott. At one month old I was nursing him and rubbing his leg, as mommy’s so often do, when I noticed that what I thought was his ankle was actually above his actual ankle. I immediately called the doctor’s
hotline and was told it should be ok to wait until the next day to take him in to be seen. I took him in the next day (mind you he has NO pain that I can tell) and the doctor was clueless but with our urging ordered xrays. After getting some groceries on the way home, as we pull in the drive we get an urgent call from his doctor saying he has fractures and she wants him admitted to the hospital immediately. We, of course, freak out and run to the hospital, I’m in tears by now, what must have happened to my sweet baby?! They let us stay with him in the room because I insisted that since I breastfeed they must. They took each of us back to look at the xrays, his fibula was broken and his tibia looked a little cracked. The next two days were filled with only things nightmares are made of, we were investigated for child abuse, we weren’t allowed to talk to my other four children. All of them were questioned separately and traumatized (this lil guy was the center of all our universes). We had social workers and specialists going in and out of our room. A social worker with a sheriff came in (I found out later they had every intention of taking him from us then and there) but after speaking with us put that on hold a bit longer. The head of the child abuse doctor people told me I was nuts when I suggested he must have a bone disorder of some kind, he said that was so rare they probably wouldn’t even test him for it. We were devastated as we watched our tiny lil guy be put in this giant tube for some kind of MRI or catscan, they weren’t very forthcoming about all the tests they were doing. I watched my sweet guy, that like NEVER cried be poked at prodded, my hubby fall apart in front of me. His dad was so careful with him that he wouldn’t even let me take him over the bumps in front of walmart in the cart, he carried him over them. They questioned each of us separately about what may have happened to him. Although all of this was happening we strived for some normalcy so we could keep it together. So I took a bath with him, like I always do, and just held him, I slept with him in my bed and held him like I may never get to again. Thank God for the nurses, especially the head nurse, they were just amazing. Once I was sitting with my back to the door holding bug and talking to him, I didn’t hear my favorite nurse, Cali, walk in and she just stated “aww, your mommy loves you so much.” I could tell they didn’t think it was possible we abused our lil man. A few days after we were there the same nurse came in and let it slip that they had sent xrays to Denver Children’s and the results back from a specialist look “good”. I’m thinking, “what is good?” I didn’t want my son to have a bone disorder but on the other hand it looked as though if he didn’t we could lose him, such a terrible situation. Sure enough not too long after they released us with a vague explanation that there was a metabolic problem with the bone that caused the fracture. We had no clue what that meant, we were scheduled for a follow up appointment with the jerk that told me I was nuts in a couple weeks. They gave us no follow up instructions, no cast, nothing.
So a couple weeks later we meet with the jerk, who is so not a jerk anymore. He’s sweating so much u can see spots under his arm pits and stuttering his apologies. He tries to explain to us that hayden has congenital pseudoarthrosis of the tibia, which he admits he knows nothing about, and hands us some pages he has googled. He also tells us this is commonly associated with a genital disorder called Neurofibromatosis and the symptoms of that scares us to death. He refers us to the only specialist in three states on the disorder at Denver Childrens (the same man that diagnosed him based on his xrays). The news was devastating but I kept reminding myself it could be SO much worse, what if it would have been every bone in his body? So we take our bundle home clueless about how to deal with anything.
At the appointment at Denver we find out a lot more about the condition, how he may fracture his tibia at some point, how he’ll have to wear a brace his whole life, how it won’t heal if he fractures, how he may end up an amputee….We get his first brace from an orthotic specialist in town (who we’ve come to know very well since then, and he’d NEVER heard of the condition before this). He was in his first brace at 5 months old but since they said he only needed if weight bearing he hardly used it. He does all his milestones at a normal rate and we adore him more every day. He is the happiest little baby I’ve had (and he’s number 5!) He learns to walk at 15 months with his brace and he and we are incredibly proud. So far no signs of NF but we see a neurologist next month to check. Nothing has held him back since, he walks, he runs, he jumps, he climbs, he’s amazing! We see the specialist in Denver about every six months, no change, fibula still fractured, tibia looks pretty good besides the deformity. I don’t hold him back from doing ANYTHING, not that he’d let me anyway. His dad coaches football and plays softball so he thinks life is growing up and playing some kind of ball. He runs around constantly with his bat and his ball, practicing, and he’s GOOD! That kid has such a good arm and catches better than me and he’s only two. I pray that he never fractures, I pray that if he does we make the right choices, I pray he has no pain, I pray that he can grow up and do whatever he wants, most of all I pray for his happiness…
Unfortunately because Congenital Pseudoarthrosis is so rare hardly any research is done on it. The same procedures they did 40 years ago are still being done, they usually show healing at first but eventual refracture. Most the time it ends in amputation. My hope is that with more and more people sharing their stories some attention will be paid to this condition and more research done. I only know a few things, I will NOT allow my son to be anyone’s gineau pig, I will NOT allow him to got through needless pain. Thanks for taking time to read Hayden’s story.
Written by L. S. C. 10.10.10