There is something to say about a mother’s intuition. I had that sinking feeling while my 3rd baby was in utero, that feeling that something was wrong.
When I was about 7 months along, I was sent to a specialist because Eli’s head was measuring off the charts, and the doctors wanted to rule out Hydrocephalus (when a baby’s head has water in the brain). After we left the specialist, and Hydrocephalus was ruled out, they said my baby just had a large head. I felt better OBVIOUSLY that it wasn’t Hydrocephalus (but was seriously contemplating a C section!) Awesome, my baby has a big head, can’t wait to push that out!
I had a second opinion and the doctors reassured me that since both my mom and my husband’s mom gave birth naturally that I would be just fine. Okay, that’s all fine and good, but I just couldn’t shake that feeling. I knew something else was going on. What can you do? I had been to a specialist and two other doctors who said everything was fine. At this point i just had to chalk it up to hormones and wait for baby boy to arrive.
My Little Miracle
Well, just like his sister, I’m 2 weeks overdue and going in to be induced. I won’t go into too much detail about the labor, but to keep it to the point – it was traumatic and he almost died coming out. There were moments I was so terrified but kept going strong. He made it out and just like before with my other two girls everything else in the world washed away and love overtook everything. This boy was a miracle, he was perfect and I was the happiest mama on the planet.
I peeled open his baby cap later on in the evening to find blood. He had scrapes all along the top of his skull! Every nurse and doctor was reassuring me and my husband that the blood was due to the traumatic birth and that his bones in the back of his skull were overlapped. These doctors said my newborn baby was cut up and bleeding because of the long time he spent in the birth canal and the traumatic labor. I could see that he had a long skinny head shape and his forehead pultruded outwards a bit. His head almost came to a point in the back. I can still remember cupping the back of his head in my hands. We laid out pillows to make sure his head could heal and there was no pressure on it. He couldn’t lay back on the back of his head at all.
You guys, that sinking feeling never left. By the two week check in, I had been to the doctors multiple times and I was reassured every time that he just had a misshaped head and he would grow out of it. I felt so helpless!
During these visits, Eli was dropping weight and could not latch properly to breast feed. I started exclusively pumping and added in formula so he could gain weight. By the one month point, my oldest was back to school, my two year old started going back to daycare, and my husband was taking his annual trip to hunt in Canada. Things were actually going pretty well. My baby boy was such a fantastic baby. Eating well now, gaining weight, and I was loving all my time with him. He was the happiest baby, just a sweetheart.
Even though everyone was basically telling me I was crazy, I never gave up on that sinking feeling. I took to Google and started researching head shapes and what you could do about it. Not long into my search I came across this really long strange word that I couldn’t pronounce. Then I saw the images attached to this word – Craniosynostosis (Cray-Nee-O-Sin-O-Stoe-sis) it means the premature fusion of an infant skull. I sank, my heart ached and I knew right then and there what that sinking feeling was. It was Sagital Craniosynostosis. One of the four types of Craniosynostosis.
I knew, these images were Eli, he looked just like these babies. I knew I had to read on further into this. I cleared my eyes and marched on through my Google search. My heart ached and I could not stop crying. I read articles and blogs and spent a lot of time just reading. My baby was going to have to have the most invasive surgery that I have ever seen, I just knew. This surgery involves cutting the head open from ear to ear, making an incision through the top layer of brain tissue and cutting the skull open, rearranging the skull to form areas for the skull to grow properly and form proper soft spots. Basically, cosmetic surgery of the skull, but absolutely necessary for the brain to expand and grow properly. Without this surgery, the brain is not able to expand and there is immense pressure on the brain. You can imagine the severity of this problem. In the worst cases can lead to death, learning delays, retardation, behavior issues, feeding issues (remember the part where I told you Eli couldn’t latch and breastfeed). The images I saw just broke my heart. Here were this tiny little human going through what looked like pure hell.
My baby, my beautiful baby boy was going to have this too? I could hardly form words but I did manage to demand an appointment with the doctor immediately and reach out to my husband in Canada. The next day we were scheduled to see a specialist in St Paul. My husband made it home from Canada in record time! I remember sitting in my living room with my precious boy. I was watching him sleep and I just could not stop crying. How does anyone get the strength to do this? How could this even be possible? How can I possibly willingly hand MY BABY over to a surgeon to have an invasive surgery done on his beautiful head?
The ironic thing was, during my Googling I came across this same doctor in an article (that I read fully) that my family doctor was referring us to. His name is Dr. Wood and they did an article on him because not only is he a leader in his field but invented a new way to do this surgery that involved little to zero blood transfusion. Basically he’s beyond amazing and we were so blessed to have him in our area. At the very least I took this as a beautiful sign from God that my research, my gut feeling, my intuition and finally a doctor who knew enough to give us a referral was all heading in the right direction.
Finally someone listened to me! Trust me, I was still praying I was wrong! Once seated and waiting for Dr. Wood to come in, he took one look at Eli and said “this is a classic Sagital cranio baby here.” We had a few people warn us about Dr. Woods bedside manner, but honestly, I loved him from the second I met him. At one point he said you are more likely to die on the way home than Eli is in my care. Some may call it arrogant, but that is exactly what we needed to hear. Here we were, facing a nightmare as parents. In Eli’s case he had what was called near total fusion CVR (cranio vault remodeling) for Sagital Craniosynostosis.
The surgery was scheduled for late November. We had to wait until he was four months old to endure the process. A month prior to the surgery we started the prep. He had to go in every week, up to two times a week, for injections to prep his blood. Eli had reactions to these injections and shots almost every time. It was pure torture enduring this with him. During this time we got a call from our insurance company that they were not going to cover Eli’s surgery unless we went to a different hospital. WHAT?! Well, thanks to my husband fighting tooth and nail, that did NOT happen and we got to keep our doctor and every amazing team member at Gillette hospital! Seriously, one hurdle nobody should have to go through weeks prior to a life changing surgery!
The day came, surgery day! Not only was this day already heart wrenching but just to add insult to injury… we got a snowstorm! (Midwest life at its finest.) Luckily my husband got us there in time and navigated through closed roads and horrible traffic.
Eli was poked and prodded and thoroughly examined and prepped. We could only focus on him, we could not hold him enough. Eli and the amazing human he is was smiling and flirting with the staff the entire time. He was so happy! We were crumbling. All of a sudden, they took him! Maybe the team said are you ready? Did they warn me? It was all a blur, the next thing I remember he was going down the hallway being held by the nurse, looking back at us. That’s it! He’s gone to surgery. We crumbled more.
We waited. The neurosurgeon came out first. Everything went great on his end. Then Dr. Wood, the plastic surgeon, came out, all good! After what seemed like an eternity we finally got to see our boy. Nothing can prepare you for that. He was sitting in this bed with more tubes and wires than I knew possible, and his head in a big bandage. It was an image that will always be burned in our heads. We started in the NICU and worked our way up from there. Eli had a horrible time with pain management. He lost all his spark and was hurting so bad. We spent so much time prepping for the surgery but we should have been more prepared for this!
The few days after the surgery were the absolute worst. We watched his head and body swell up so bad that he was completely unrecognizable. My husband walked in on the morning of day 3 after spending the night with our other children and honestly said he could not recognize him. Eli would wake up and just whimper and whine in pain. He had huge crocodile tears forming through his eyes that were completely swelled shut. WHERE we found the strength to go through this, I don’t know. You don’t exactly have much of a choice at this point, but we did it. Sometimes I look back at these moments and still cry. You will never get over seeing your baby in that much pain. It’s forever scarred in my brain, I thank God he will never remember it.
My oldest daughter came into the hospital room on day four. Elly came up to him, knowing ahead of time that he looked nothing like she remembered. He was very sad, swollen and in pain. Eli was sitting upright on my legs, being cradled in whatever comfort I could offer. Elly said “Hey Bubby” and immediately he turned his swollen head and body and smiled! Just a short time after that he finally got one small sliver of his eye open!
Once that boy got light into his eye again there was no turning back. You would have never convinced me on day 3 that we would be leaving the hospital on day 5, but we did! This beautiful soul, amazing strong boy did it. He endured more pain than most of us will feel in a lifetime and came out smiling. He is the strongest person I know, has an amazing personality and between the sparkle in his eye and contagious smile can light up even the darkest room! Unfortunately the roads to recovery were not entirely over. Eli could only sleep upright for months and usually only in 20 minute increments. My amazing husband made me a larger than life size chart so I could keep up with his meds and help keep us both alive and going! It was a tough couple months of zero sleep.
Funny not funny moment during his recovery at home…My husband’s coworker and wife came over to bring food. I opened the door, took the food and shut the door! Omg, honestly, I still don’t remember to this day if I said thanks or even what they looked like. I came to a couple hours later. Called my husband in hysterics letting him know his friend was here and like the zombie I was I just shut the door in his face! Dear lord! Sleep deprivation is a real bitch! I felt so bad.
You think you know strength? Talk to a Cranio family. Better yet, spread awareness for these warriors! Cranio statistics…1 in every 2,500 live births there is a baby with Craniosynostosis. I was floored when I heard it was the same statistic as SIDS. Everyone has heard of SIDS correct? Why did we go through teams of doctors who were completely clueless? Nurses who have never heard of it? WHY did I have to get to the point and self diagnose my son via Google? WHY has what seemed like NOBODY knew of Cranio?! Were we angry about this? Sure! I spent many nights stewing about the lack of support and awareness. You can’t control that now however.
One thing I can do is help spread awareness. EARLY DETECTION IS KEY HERE! In all Cranio cases, early detection… early detection! Now we hope and pray awareness will continue to spread. We pray that others are as lucky enough as we were to get early detection. That is really the key, finding out as soon as you can.
September is National Craniosynostosis Awareness Month, so here we are in September, spreading the word in any form we can!
Blessings to all you warriors and cranio families out there! A special thanks to my family and all the members of the Cranio Support group. Without all of you we would not have been able to process this in the manor we did. Obviously, a big shout out to my little warrior, my baby boy Eli, the cutest warrior I know.
Lynnaya — Mom of Elly Mae, Ava, & Eli
Same for me, 8 years ago. Everyone thought I was crazy when I would bring up the shape of his head or how it felt like there were ridges going from the front to back of his skull when he was born. Finally had a doctor listen to my concerns at a newborn checkup. 3 months later he had a full cranial vault remodel, but his required 3 blood transfusions during his week stay at Gillette.