Thursday, October 23, 2014
Living a Parent's Worst Fear Part 1
It'll never happen to you. All of your children will be born perfect, healthy, and have a bright and promising future ahead of them, right? That's what I always thought and expected, too. When my son was 3 days old, we were waiting to be discharged from the hospital when his nurse walked in to finish signing the papers and said, "Oh, by the way, they told you he has a hole in is spine right?" Looking dumbfounded I responded, "No. What does that mean?" To which she responds, "He has spina bifida," and walks out of the room.
Of course this led to an agonizing 2 hour wait for his pediatrician to come into the room so I could get more answers, but when he finally did, and I got the chance to ask him he said, "No, he's fine."
That should be reassuring right? Well, there's a visible hole in my child's spine. How could that be "fine?" At his 2 week check up, I asked the next pediatrician, who said "Is there anything leaking out of it? No. Well, then he should be fine." Should be fine? This led to 4 years, over 13 doctors in three different states to find the answers to our questions.
Something Isn't Right
From the time my son was about 3 months old, our suspicions over his "normalcy" started as his right leg turned in and he refused to put any weight on his legs, which led us to another doctor who told us, "I don't know, but he may never walk right," and then saw us out the door. When my son was supposed to begin crawling, he didn't use his legs and then the digestive and bowel problems he had since birth drastically increased, which were diagnosed as GERD, but we knew wasn't right either.
Once again, another doctor, who looked in his arm pit when we informed him he has "a sacral pit" as that's all we were ever told. When my son began walking, the fears increased as we knew something just wasn't right. His right side just couldn't keep up and he began falling more often than he should have, so severe we almost had to put a helmet on him. Putting his teeth through his lips and tongue almost daily, knocking himself unconscious, all the broken teeth, the unexplained passing out, and weekly ER trips because he was hitting his head so hard too many times. We were told "he's just clumsy." But we knew, he wasn't "just clumsy." We knew something just wasn't right and we couldn't get anyone to listen, even as the symptoms progressed.
Finally, when I was pregnant with my 3rd son, I was going over my history with my doctor and informed him about my son. Striking my OB's curiosity (who was also a pediatrician), he pulled my son from the waiting room and diagnosed him with a rare form of spina bifida. Finally, a relief right? We had a diagnosis. Someone believed us. But, then we were informed the condition appears to be hereditary and there's a chance the child I was currently pregnant with could have it, too. Plus, the doctor now said my son's care was now out of his hands because he knew nothing about spina bifida. This led to an agonizing 9 months, waiting to see if this baby too would have spina bifida. Luckily, he doesn't, but we still had no answers about Alix.
Finally, we were able to see a neurologist, who specialized in childhood spina bifida. Although it was a 4 hour drive to his office, we were hopeful we would finally get some answers, but instead we got, "Wow. I've been doing this 20 years and this is the first case like this I've seen. I've only read about cases like this." Obviously, this wasn't very reassuring.
On top of that, it was discovered something was wrong with his heart, too. After weeks of tests at the neurologist and cardiologist, I don't think I have ever been so scared or worried in my life. My son's fate basically rested in the hand's of the test results.
As nice as it was to finally have someone believe us about our suspicions that something just wasn't right, we still had no answers. Almost 5 years later and all we knew was there's a hole in his spine, he has undeveloped muscles, needed physical therapy, and something was wrong with his heart. What does his future hold? Will he grow up normally? Will he need surgery? So many questions with so few answers.
You always think, this will never happen to you. And, no one prepares you for it when it does. My son is perfect and beautiful in my eyes, but after learning his diagnosis, he seemed so fragile. Overtime, we've learned to accept it for what it is. We still don't have the answers we'd like, but the journey continues.
Check back on Thursday to learn more about Alix's story and where we are now.