Lucy’s craniosynostosis journey began in Fall 2011, when we noticed that her head shape was changing. A bump, or protrusion, was forming in the back, and her forehead became more prominent. Her head was growing more elongated from front to back. We kept an eye on it for a few months, and then decided to check it out with Lucy’s pediatrician at her 12-month well visit in February 2012 because we were getting concerned that something wasn’t right. Our pediatrician recommended that we start with an ultrasound of Lucy’s head to check for swelling or other soft tissue issues. The ultrasound was done in early March 2012, and it came back normal, which was a relief- no tumors to worry about, etc.

Meanwhile, I had been online, researching what could possibly be going on with Lucy’s head, and I came across sagittal craniosynostosis- something I had never heard of before- but many of the characteristics fit our concerns for Lucy. I found amazingly supportive parents online at Cranio Kids (www.CranioKids.org) and asked for their opinions. We then proceeded to get a referral to meet with Dr. George Jallo, neurosurgeon at Johns Hopkins Hospital in Baltimore, MD.

We met with Dr. Jallo at the end of March 2012 and that’s when we officially received the diagnosis of sagittal craniosynostosis. Lucy was thirteen months old. We then met with Dr. Amir Dorafshar, the reconstructive and plastic surgeon, in May 2012, and he also confirmed the diagnosis. While Lucy’s case was considered relatively mild, the back end of her sagittal suture had already fused, causing her head to grow in a somewhat elongated shape from front to back as well as causing a flat spot toward the top/back of her head. We decided to proceed with surgery, which is called subtotal calvarial remodeling/reconstruction (CVR). We had a 3-D CT scan done at Hopkins in June 2012 so that Dr. Dorafshar could prepare for Lucy’s surgery with surgical planning computer software. This made us feel so much more confident in moving forward with surgery because we knew Lucy’s surgeons were able to precisely plan their cuts and reconstruction, and not just rely on figuring it out when the procedure was already in process. Lucy did not have any significant developmental delays prior to surgery, but she was not walking completely independently until after surgery. Also, her language development progressed rapidly starting the week after surgery, even though it wasn’t technically delayed prior. I’m not sure if that was just a coincidence, or if the surgery had an impact. I will probably never know, but in my heart, I think we made the right decision for her to have the surgery.

Lucy’s surgery took place on August 8, 2012, which was one day before she turned eighteen months old. We got to Hopkins Children’s Center at 5:15am on surgery day, and things moved pretty quickly in pre-op. All of the nurses and medical staff were so warm, friendly, and sweet to Lucy as they came in to explain things to us. I took Lucy back to the OR at 7:30am and stayed with her for the few minutes it took until she fell asleep under anesthesia. When surgery was over and Lucy was stabilized in PICU, Dr. Dorafshar brought us back to see sweet Lucy. She looked very rough, and very swollen. Really, she looked pitiful and not at all like herself. It was extremely difficult to see her that way, with lines, drains, breathing tube, head wrapped, etc. The only thing I remember about that point in time in the PICU was hearing Dr. Dorafshar’s voice, and that was all I could focus on. He was so calm and reassuring, and that was exactly what I needed to stay composed and to begin to focus on helping Lucy to recover. Our PICU nurses were also wonderful, and they kept us informed of everything that they were doing, and they taught me so much. I was amazed at how caring and skilled they were. Lucy’s eyes were swollen shut for the first one and a half days after surgery, but she progressed quickly in her recovery after that.

By the time we left the hospital, Lucy was sitting up on her own, crawling around her crib, playing, laughing, and talking. She was also trying to walk, but was a little unsteady at first since her head was still swollen. I was and still am so impressed and grateful for the care Lucy received while she was in the hospital. Dr. Dorafshar and Dr. Jallo stopped by numerous times to check on Lucy during her recovery in the hospital, and to answer all of our questions. Our anesthesiologists (Dr. Emmett Whitaker and Dr. Rob Greenberg) visited as well in the days after surgery, and they were so kind, too. All of the nurses were wonderful, and they helped us to be very involved in caring for Lucy as she recovered, which meant a lot to us.

We are thankful every day for the amazing doctors and staff at Hopkins Children’s Center. It is now my hope that I can help to spread awareness of craniosynostosis, and to support others whose children may be facing surgery. Lucy is 9 months post-op as I write this, and she is doing wonderful. She is a spirited and funny 2-year old, and her hair has grown back, covering her scar. I highly recommend Dr. Dorafshar and Dr. Jallo to any family, not only because of their extensive expertise and skill in treating craniofacial and neuro conditions, but also because of who they are as people. They will always have a special place in my heart because of all they have done for Lucy.