Olivia Grace was born on November 30, 2012 weighing in at 7 lbs and 20 inches long and was the most beautiful and precious baby we had ever seen. We immediately fell in love with her and she has continued to steal our hearts every day since. My pregnancy had been enjoyable with no morning sickness and tons of energy but was notable for frequent braxton hicks contractions. I had a relatively fast labor. At around 6 am I had been at 8 cm and had gotten my epidural. After that, my doctor had gone into a c-section and didn’t come back in until 12:20 pm. Olivia arrived very shortly after at 12:30 pm. Because of the time she had spent in the birth canal, Olivia’s odd shaped head didn’t cause any concerns for doctors and nurses in spite of mine and mine husbands repeated concerns that her right eye was wide open and her left eye remained shut. We had initially been worried about her left eye since it was shut when the right one was opened (we now know that Olivia had what was referred to by our doctors as a Harlequin eye on her right side).
Two days later we arrived home and began going through the joys of parenthood. As Olivia grew and we would go to doctors appointments, I would bring up her asymmetrical eyes and even mentioned that in the mirror it seemed more apparent. Our pediatrician brushed off our concerns again referring to the time spent in the birth canal and we were told to give her head some time to “straighten out”. We also began noticing that Olivia held her head at a tilt and I began raising questions about torticollis. I had been in an online forum for new moms and a mom had told her story in which her daughter’s head seemed asymmetrical and she needed a helmet to correct it. I shared the forum with my husband and we we both brushed it off after we were told by our pediatrician at the next appointment not to worry.
I just couldn’t ignore what I saw every time I held her in front of a mirror. I continued to raise concerns to my husband, parents, sisters, etc. It was tough to speak up about my concerns, especially when saying them out loud made them more real and also made me feel like I was insulting my gorgeous baby. Looking back I’m happy that I did speak up and now wish that I had done so louder. I’ve learned that as a parent you are your child’s best advocate and that is your job. If you feel like something is wrong, you should express it and continue to until someone listens. Nothing can compare to a mother’s intuition. Finally at her 6 month appointment, her doctor suggested that maybe we should see an eye doctor. Being the first time mom that I am, I had a million questions but was handed a pamphlet for plagiocephaly and helmet therapy. I thought hearing that my beautiful baby girl would have to spend her infancy in a helmet was the worst news I could have been dealt. I left the appointment frantic with worry and called my husband. We agreed that we wouldn’t Google and make ourselves nervous until we had answers.
A few hours later my husband had given into temptation and e-mailed me a website with children who had coronal craniosynostosis. I’ll never forget the phone call that he said, “Michelle, go look at this website. The kids’ heads are shaped exactly like Olivia’s.” Sure enough, I looked and my stomach dropped. It’s just that gut feeling that this is exactly what she has. The next two weeks were a flurry of phone calls and pleading to doctors to fit us in for appointments as well as a roller coaster of emotion-relief at being told it didn’t look like craniosynostosis then being told by the next doctor it did. The agony of not knowing was terrible. We got a second opinion from another pediatrician a few days later and she said Olivia’s soft spot was small but there and it didn’t seem like a glaring craniosynostosis case to her but she also had us see a physical therapist for Olivia’s neck. The physical therapist was the first one who told us to brace ourselves for the appointment with the neurosurgeon because she had never felt a soft spot as small as Olivia’s. Sure enough when we met with the neurosurgeon our worst fears were confirmed. Olivia had right coronal craniosynostosis. Through the tearful doctor appointment, and although we didn’t wind up going with that doctor (we opted to choose someone with more experience), he repeated over and over again “It’s bone not brain”. It’s an important saying that I repeated to myself frequently over the next couple of months. It was funny, in an odd sort of way, to think that at that appointment I had been praying to hear that all our daughter needed was a helmet when not even two weeks before the helmet news had sounded like the end of the world.
We then made an appointment with neurosurgeon, Dr. Mark Souweidane and the plastic surgeon he referred us to, Dr. Henry Spinelli at New York Presbyterian. We immediately liked Dr. Souweidane’s professional, competent, and reassuring manner. He even informed us that there was an adult neurosurgeon at New York Presbyterian who had craniosynostosis as an infant. How reassuring! The less invasive surgery wasn’t an option for us according to the doctors because Olivia was over 6 months old so we had immediately agreed to the surgery and in our eyes, we just wanted to get it done and put it behind all of us. It felt good to have a plan even as horrible as it was. The next few weeks passed quickly as we fought with our insurance company and finally scheduled the surgery date. During this time I was adamant with myself that I wouldn’t let the impending surgery get in the way of enjoying the time I had with Olivia. The first year goes so quickly and I didn’t want to miss any of it because I was too caught up with worry. That doesn’t mean that there weren’t nights me and my husband were literally sick with worry but we tried our best not to let Olivia sense it and to put it in the back of our minds. I also spoke with another mother who had gone through this which was enormously reassuring. She had told me that I when I looked back it would feel like a bad dream and that it was just a bump in the road. She was right!
The surgery came and that morning putting her down on the table in the operating room was the worst experience in my life. I kept asking myself over and over if we were making the right decision and if she really needed to go through it. Every bone in my body was saying “Pick her back up and take her out of there.” Instead we dragged ourselves out and began the anxious wait. The next 6 hours went by very slowly but finally the plastic surgeon came out and told us our baby girl was done and did beautifully. He said she had immediately woken and started grabbing and trying to sit up-what a tough girl!
In the next 48 hours we were exhausted and it was tough to watch her swell up but she very rarely cried (mostly when they were trying to get blood) and for the most part seemed comfortable and sleepy. The swelling was unreal but we were able to hold her and lay with her, and she was peeking out of one eye and was even able to see us and give us a smile! The relief of being on the other side of the surgery made the hospital stay and pain of watching Olivia swell and heal bearable. The third day we went home and Olivia was playing with her toys, sitting up on her own, even smiling her big gummy smile at everyone who came to visit! Everyone who told me I would be amazed by how well she did seriously underestimated her-amazed couldn’t even begin to cover what I felt!
If I have any advice for mothers going through this it would be do not let this get in the way of enjoying your child. The time we have to watch them grow is so precious and it doesn’t stop or stand still while you grieve for what they have to go through. It’s not fair that she has to go through it (as me and my husband would often say to each other) but it could be worse-much worse. If nothing else, our time in the PICU opened our eyes to the struggles other parents go through. We are now nine months post-op and Olivia is meeting all milestones on time if not ahead of time and has healed so well you actually have to search to find her ear to ear scar! I don’t think there has ever been such a sweet and funny little girl! We have celebrated her first birthday and continue to celebrate Olivia every day! We are so grateful to our doctors, families, friends, and all of the cranio moms and dads out there who shared their stories and gave us silent support through all of this. Reading all of the stories out there gave us comfort and courage.