Leo James was born on November 8th, 2013 almost two weeks before his due date and five days before my scheduled c-section. Leo was my second child and the pregnancy alone was proving to be very different from my first experience as mother. He was much more aggressive in his movements and he was even born screaming. It seems silly but in the womb my daughter was gentle a trait that she had carried into her infant and toddler years.
Both my children look a lot like their father but Leo has distinctly different traits than my daughter. Unlike his older sister, I knew from the time I first saw him that he had his daddy’s nose and eyebrows. I remember going back and forth between newborn pictures of my daughter and current pictures of Leo looking for similarities and differences between the two, and I remember thinking that his head was a little cone shaped but then brushing it off because my daughters had been as well.
At his two week well baby checkup his pediatrician examined his head, looked concerned and called in another pediatrician, looked at him from several different angles and then asked the other pediatrician if she felt a ridge running from the top of head towards the back. She asked me to feel it and I did. I really did not know what the ridge meant so I asked her and she replied that she “was concerned because it appeared that some of his sutures had fused prematurely”. She said she was referring him to the Craniofacial team at Miami Children’s Hospital (MCH) for an evaluation. As an early interventionist I embraced her proactive decision to refer us. I was sure she was just being thorough and I was confident that if anything this appointment would confirm that all was well.
I called my sister, who is a Neonatal Nurse Practitioner, and she too was confident that the evaluation would show that Leo probably just had some overlapping sutures, which happens often as babies prepare to go through the birth canal. I called the Craniofacial Team and they asked me for the diagnosis given by the referring pediatrician, but I did not have one. I simply replied, “she said she was worried about fusing of sutures”. The receptionist immediately gave me the number to one of the pediatric plastic surgeons on the team, Dr. Chad Perlyn. She said that their (Craniofacial Team) waiting list was long but Dr. Perlyn could potentially see us sooner and evaluate Leo; if needed he could then be seen by the team. We made the appointment for two weeks from that date.
I didn’t have a diagnosis and after contacting the Craniofacial Team at MCH I was sure the pediatrician did not give me one for fear that I may Google. She was right and her non-diagnosis did not stop me. I googled “premature fusing of suture” immediately after scheduling the appointment with Dr. Perlyn. I saw the term craniosynostosis for the first time. I read the definition on several different websites. I compared it to the description of overlapping sutures. I looked at hundreds of photographs and diagrams that detailed craniosynostosis and almost immediately confirmed my two week old son had sagittal craniosynostosis. I researched the diagnosis for hours on end. I read medical journals and all the success stories on the Cranio Care Bears website. I spent days reading and crying and staring at my little boys head. My family begged me to stop self-diagnosing and urged me to step away from the internet. I couldn’t stop. I was positive that he was had craniosynostosis and I needed to see a professional as soon as possible to get his surgery scheduled.
I will never forget the day I met Dr. Chad Perlyn. I walked into that office pretty well informed concerning the diagnosis and the corrective surgeries. I even joked with my friends and family that I could do the surgery myself after reading so much information in the internet. He was incredibly warm and charismatic. He confirmed what I had already believed to be true, Leo had Sagittal Craniosynostosis. He prescribed a CT scan to confirm the diagnosis and told me a little bit about the corrective surgery they offered at MCH. He assured me that while this was a particularly scary surgery for parents it was relatively common for him as a Pediatric Plastic Surgeon. I held it together, then he began to describe the surgery. I had read this in detail countless times but still hearing it said back to me was terrifying. I had walked in there confident that I would be able to choose from the two surgical options (endoscopic and cranial vault reconstruction). I wanted the endoscopic option for Leo for the obvious reasons, earlier intervention, shorter procedure, less bleeding, decreased post op recovery time and smaller incision. Unfortunately they did not offer that procedure at MCH. After discussing this with him for a few minutes I knew he was the best doctor for us and after talking to my husband we agreed that the CVR option would be the best one for us and that Dr. Perlyn would be our doctor. We later met the neurosurgeon, Dr.Toba Niazi and her team and Leo’s surgery was scheduled for May 22, 2014. I made a vow to enjoy my baby for the next few months. Just as I had with my daughter I took hundreds of pictures of him and I tried as best as I could to push the impeding surgery to the back of my mind.
In those six months he developed such a happy disposition. My daughter changed his name to Super Buddy James around January when she watched excitedly as my husband “flew him around the house” in a game of super heroes. It stuck. She introduced him to strangers as Super Buddy and corrected friends and family whenever they called him Leo. We let the nickname stick, why not?! Sure he wouldn’t like it to much at 15 but for now it seemed like the perfect way to walk into the hospital…as a super hero. He did have a mean streak most evident when he was hungry or tired. When he got angry, he really got ANGRY.
Admittedly I was extremely anxious to know just how my baby would grow and change and how his head would look as a result of this before the surgery. My anxiety would get the best of me and I would do some google searches now and again. Although all of close friends and family knew about Leo’s cranio I had not made a public announcement on social media. Five weeks before the surgery I realized that fear was starting to set in and I decided to reach out for positive energy, vibes and prayers on FaceBook. After all, I bombarded my Facebook friends with pictures of my kids on a daily basis asking for their moral support now when I needed it seemed warranted. About a week before the surgery I received a cranio care package from Cranio Care Bears and with my emotions raw from the thought that I would soon be handing my baby boy over to the surgical team I bawled. The package was extremely thoughtful and it forged a connection to all the parents out there who had gone through this experience.
During the surgery he needed a blood transfusion and he needed more blood on Day 2. His head swelled to nearly twice its original size, right eye swelled shut , his left eye was a slit and his ears protruded outwards. He did not eat or drink for nearly three days post op. We could not hold him because the drainage tubes that had been put in were sensitive to movement and leaking onto the pillow instead of the bulb like receptacle they were meant to drain into. When he was awake he was miserable yanking at all the lines that he was attached to and crying. And he quickly developed a reputation in the PIC-U because he was sure to let everyone know how upset he was. The nurses repeated to me what I already knew, “boy when he is angry…he is ANGRY”. However negative I held onto this, it was a sign that my little boy was still there under all those lines and inside that swollen little body my little boy was intact. We were transferred out of the PIC-U on Day 3 and all but one of the lines were removed. I could hold my baby again without fear of hurting him or disrupting the draining!
By the end of Day 3 his left eye opened completely and he gave us some smirks. He patted us on the back when we held him. We took walks around the floor and he even kicked in excitement when he saw his big sister running out in front of him during the walk. On Day 4 his right eye was completely open and his swelling was nearly gone. When the doctors came around for the rounds they told us we could go home that same day! We were discharged! The first two nights home were as expected. He woke up frequently crying and difficult to soothe but that is a small price to pay for such a smooth recovery and a healthy baby.
I noticed the change in his head shape immediately and Dr. Perlyn told us we should expect more rounding as he grows. We are a week post op today and we are extremely grateful for being able to leave the hospital with such joy (so many parents are not afforded the same), we are grateful for the out pour of love and support from friends, family and strangers alike and of course grateful for the medical team at MCH.