Up until Samantha was six months old, I didn’t give much thought to the abnormal shape of her head. But suddenly a foreign word crept into my vocabulary – craniosynostosis. It became a whirlwind of confusion and fear while I attempted to wrap my mind around what this meant for my baby girl. We lucked out and were able to have a consultation with Dr. Ben Carson at Johns Hopkins Children’s Center a couple weeks after initial diagnosis. Prior to that I discovered craniokids.org and was introduced to other moms going through the same thing. Parents from all over the world shared their children’s stories, and little by little I felt renewed strength seep into my veins.
Samantha’s surgery was scheduled for Wednesday October 19th with Dr. Carson (NS) and Dr. Dorafshar (CFS). Ten days before the date my world slowly unraveled. My five year old daughter, Taylor caught an upper respiratory infection. She and I were both sick, and unavoidably Samantha caught it too. And then all my well laid plans began to unspool. Frantically, I tried to make other arrangements for Taylor, but as minutes ticked off the clock, I wanted to give up and call off surgery. I had two sick kids. My mother and my mother-in-law were incapacitated. I felt the walls closing in. But a ray of light shined through. A dear friend offered to take Taylor last week. Our only other hurdle was getting Samantha healthy in time.
The night before surgery, I said a lot of prayers. Dr. Carson wasn’t given to me for no reason, and so I asked my deceased brother, Alex to let surgery happen on schedule. Strangely enough, it was as if Samantha knew something life-changing was about to happen. She curled up in my arms, and fought off sleep until her tiny eyes became too heavy to keep open. We slept together, clinging onto a sliver of hope.
Wednesday morning, my husband and I took her to the pre-op room and were greeted by the senior resident for plastic surgery. He explained everything in full detail, and even had us laughing. I held my breath when the anesthesiologist looked her over. Relief washed over me the second he cleared her for surgery. Only one snag. Hopkins forgot to run a blood test to determine what type of blood she was. That postponed surgery for two hours before they were able to get blood into the OR.
All in all, I was impressed with Hopkins. The head nurse notified us every couple of hours to give updates. Unable to sit in the small waiting area, I walked around the hospital and did everything possible to pass time. And then at 3:30 I received the best news. She was done and being transferred to PICU.
Inside PICU, I realized how fortunate I was. On the opposite end of the room laid a newborn girl hooked up to an LVAD wire. Swallowing hard, I said a silent prayer for her and turned my attention on Samantha. Dr. Carson came in and told us as soon as he released the suture her brain mushroomed as if it finally was able to flourish after being crammed in tight confine for eight long months.
Day two was the hardest. When I entered PICU at 5:30 am to watch Dr. Dorafshar remove the dressing, I discovered Samantha’s head had swelled to twice it’s size, and both eyes were purple and swollen shut. Amazingly, she didn’t cry once, and was discharged to the recovery floor the following morning. Dr. Dorafshar commented that even puffy she looked beautiful. That brought a smile to my face. Samantha proved to me how special she was during those tentative moments. That evening her oxygen saturation dropped, and the nurse put her on oxygen. They said it was normal, but of course it had me a little concerned. My baby girl still didn’t whimper once. She took each hour in stride, and had the nursing staff eating out of the palm of her hand. And then Saturday morning, she was discharged. The nurses asked us to return to Hopkins once the new children’s center opens in April so they could see Samantha. I instantly beamed, and told them I’d love to bring her back.
The past couple of months have been a roller coaster, but I couldn’t have gotten through it without the love and support from family, friends, and an amazing group of women I met online through cranio kids. I’m not sure exactly why Samantha had cranio, but without going through this, I wouldn’t have been blessed with meeting my new friends. I wasn’t a believer that everything happens for a reason, although this has me thinking. Cranio kids aren’t defected. I think it’s better to say they are the strongest of the strong. Four days post-op, my baby girl is giggling and jumping around in her bouncer as if nothing changed. As I close one chapter, I begin another and extend a comforting hand to a new family just starting this scary cranio-coaster ride. Samantha and I will be waiting to embrace you on the other side.