Welcome to the world Apollo Jones Edgar.
“Congratulations! You have a brand new baby boy!”
“Now, his head is a little small so we’ll keep an eye on that.”
“What this probably means is that some of his sutures have prematurely fused together. Mention this to your pediatrician and just watch the growth to ensure his head continues to grow.”
Off to Google I go…
Craniosynostosis. I have (incorrectly) diagnosed my son thanks to the help of Dr. Google. What this basically means is that if the head doesn’t grow that the sutures may actually be fused. You can have an x-ray to confirm this and may need surgery.
Simple and fairly common. Thank you Dr. Google. Mind at ease.
Weeks go by and he’s the perfect little angel baby.
Two weeks. Perfect.
Three weeks. Perfect. Cries a little.
Four weeks. Crying. A lot. Swaddle, bounce, shhhhh, change the bottle, change the formula. Try everything. Still crying. “Maybe it’s colic.” “Maybe he has a headache.” “Maybe his head can’t grow.”
Five weeks. Crying. Harder and longer.
Six weeks. Screaming. Body stiffening as if in pain. SHRIEKING. Inconsolable.
Ok, that’s it. Time to call the doctor.
This is the moment. Although we had no idea. This is the moment that our lives took a turn in a direction we never would have imagined.
Our pediatrician, after seeing Apollo, hearing his shrieks, seeing his stiffening body and realizing his head had not grown since birth, sends us to get x-rays. We wait patiently for the results and soon get the call that we definitely were not expecting. Our pediatrician calls to tell us she’s spoken with a pediatric neurologist and wants us to leave as soon as we can and head to the emergency room at Children’s Hospital in Birmingham where we will meet with the neurologist and have some more tests done.
In our minds we’re still thinking Craniosynostosis. Maybe it’s just crucial he have surgery right away to prevent damage to the brain as it tries to grow.
Little did we know…
Little did we know that we would be rushing to the emergency room at Children’s Hospital where we would be waiting and waiting and moved to one room and waiting and moved to another room and waiting some more.
Little did we know that after taking my tiny helpless crying six week old baby and strapping him down to a narrow table and sliding him into a giant spinning machine, the doctors would come back in and tell us they had found several areas of calcification on his brain.
“Do you have any questions?”
Do I have any questions?? I have a million and one, but I can’t speak. My mind is racing. Calcification? That’s not good, right? That’s bad. This is bad. What does this mean? Are they sad? They look sad. This must be really bad.
It’s after midnight and while my brain is still racing trying to process this information they tell us a few more things and let us know we’ll be moving to an overnight room where we’ll be able to get some rest and then we’ll begin more tests in the morning and meet with several different doctors.
It’s 3 am and we finally can fall asleep. In shock. Exhausted. Confused. So many unanswered questions.
We’re able to get about three and a half hours of heavily interrupted sleep before we finally are just too awake and anxious for what’s to come to even begin to fall back asleep.
The first doctor to come see us that morning was the neurologist with the CT scan results. And this is when our world turned upside down. She showed us our little babies brain and all of the areas that had been compromised while he was in the womb. She explained that what likely had happened is that he contracted a virus which caused an infection and that he got it from me while I was pregnant. She let us know that our baby would likely be developmentally challenged and could even possibly end up with Cerebral Palsy.
From this point on we saw doctor after doctor. I was asked a million questions. Were you sick while you were pregnant? Do you have a cat? Do you have a litter box? Did you travel out of the country where you might have contracted Zika? Do you remember being bitten by a mosquito? And on and on and on.
We saw so many doctors and heard so many medical terms we’d never heard before. We were going on no sleep, hearing things no parent wants to hear about their new baby. Doctors explaining things to us that, honestly, couldn’t even fully sink in.
It was the longest 24 hours of our lives. But our little man was a trooper through it all. Being poked, prodded and strapped down. He was a trooper.
So in a nutshell, our sweet, precious, brand new baby boy has a rare birth defect called Microcephaly. Right now the doctors are working to try and figure out what exactly caused this to happen. Running tests to figure out what, if any virus might have caused this and possibly looking to genetics as the cause.
We were sent home after 24 hours. And we still have so many questions. We’ve already got four more appointments set up in Birmingham in the next couple of months to find out test results and possible causes. But none of that really matters.
What matters is that we’ve got a beautiful baby boy that we love with all our hearts and we will love him no matter what. Only time will tell what areas of his life will be affected and what sort of delays he may have in development, but for now we just love him for the sweet skooshy kissable baby he is.