As our son turns one, we finally thought we’d share our story in hopes it brings more Awareness of craniosynostosis and helps other parents going through this now, just remember that it will pass and that “ you are stronger than you think”.
We found out we were expecting our first son Emilio Luis Garcia and our pregnancy went nothing but perfect. On August 22, 2013 at 8:29p.m. after an very painful induced 26 hour labor and 3 hours of pushing our 6lb 4oz 19in. Baby was born with the help of Ventouse intervention (vacuum) , our heart was filled with love and happiness. However, as doctors checked him we notice the panic and confused state of the physicians and medical staff that were running in and out of our room. After not being able to hold or see our son for the first time we knew something was wrong; it was then when our happiness turned into an incredible level of fear and sadness, as we were informed that our son was born with a broken nose and severe miss shaping of the head. I was able to see my son for a couple seconds as his NICU pediatrician held him up for me and I notice the broken bloody nose and the miss shaped scalp, I was told he would be in NICU for further testing. As, they walked away with him my husband followed and I stayed back scared, confused, heartbroken and in tears. The nose was broken back in to place but further testing needed to be done for his miss shaping of the head. The doctors started running tests and we were given many diagnosis it went from : “ it is just miss shaping of the head, give it a couple days and it will go back to normal“ to “ we are not sure if his brain is fully develop“. We were devastated, confused and scared. No doctor knew what my son had, no one had heard about craniosynostosis. More doctors were called from other hospitals, it was one of the pediatricians at the NICU that told us she believed it was a condition called craniosynostosis that happens to 1 in 2,000. At the time it didn’t matter what it was we just needed an answer. After 4 days in the NICU we got sent home without a confirmed diagnosis. The next couple of days consisted on more and more doctors appointments and research from our part , we finally meet Dr. Fedor and Dr. Wexler who told us that no more testing needed to be done our son had sagittal craniosynostosis and it only could be repaired with a cranio vault reconstruction surgery at the age of 5 months. The next few weeks were the hardest; we were trying to enjoy our little one as much as we could but were constantly reminded that the big day was near.
February 4, 2014 at 12:00 my husband walked our son into KaiserPermanentHospital. Fear can’t even describe what we felt, but we knew that this was the best thing for Emilio. We were overwhelmed with the amount of support and love we got from our Family and friends and wouldn’t be able to do this without them. We held onto our faith, our strength and our love for our son. They took my son from my arms into surgery at 3:00 p.m. That was the hardest thing I have ever gone thru. My heart was crumbling into pieces. Shortly after they called us into the post-op room where we were once again by his side; relieved we stood by his bed side happy that it was all over and that we were together once again. Surgery went perfect as expected. He had to have a transfusion but luckily friends and family were able to donate. Emilio looked pale and had a lot of medical equipment attached to him but we knew it was only temporary, we were in PICU for one day and then we got transferred to a regular pediatric recovery room were he remained on morphine. Amazingly he didn’t get as swollen as we expected and we were able to hold him and sleep at his side. He started to eat and act more like himself as the days went by. After 5 days we were sent home with Tylenol and are special dressing cap to protect the incision site. As we were driving home my sister stood there with a sign that read “Welcome Home” , Yes, we were home and this bad dream was all over.
Emilio’s Recovery has been amazing! He is a strong boy! In 1 year, he has showed us the value of strength and love..he is our HERO. We strongly believe that you never know how strong you are until being strong is the only choice you have. Emilio will now continue to grow and be his handsome happy self. He will visit his neurosurgeon every six months until he becomes an adult.
We want to thank Cranio Care bears for our Care package and all the support shown to us.