Dr. Rehan's Call

Dr. Rehan called the next afternoon.  The first thing out of her mouth was, "Trish, how are you doing?". She couldn't believe the diagnosis. They had sent a consult letter and preliminary CT results already that day. I thanked her for catching it - I had talked to another mom who went through 3 doctors before her daughter was finally diagnosed at 11 months.  She told me that she wished she would have sent us sooner, but Adeline was only the second baby in all of her years as a pediatrician that actually had craniosynostosis.  I told her about the battle we might have with the insurance company and she said she would call and send letters, she would do whatever she could to help. It made me feel grateful that Adeline had such a wonderful pediatrician, but also made me realize how rare this condition was.  I didn't want to feel alone.
I joined craniokids.org, a online support group for those with loved ones who have craniosynostosis. So far the ladies I have met are amazing.  I feel so much more confident now that I can share my feelings and concerns and questions with other moms that have gone through or are going through the same journey. I just can't wait to be "on the other side."

The First Visit to the Craniofacial Clinic at Children's Hospital and Medical Center, Omaha NE

The day of the appointment finally arrived.  We drove down to Omaha and got there early.  We had a nice lunch and went to the clinic.  The clinic was amazing.  We received a pager, and when they were ready for us the pager blinked and a message appeared.  Everyone was very kind, they made us feel like Adeline was the only patient in the clinic that day. Dr. Miller, the craniofacial (plastic) surgeon, came in first.  He walked through the door, introduced himself (he had a cold) and immediately told us that Adeline would need surgery - He didn't even touch her head.  Aaron and I didn't look at each other the entire time Dr. Miller was in the office.  He was very straightforward.  He explained Adeline's condition and the entire surgical procedure.  We asked a lot of questions and he answered them patiently.  He told us how they would create and incision across Adeline's skull from ear to ear, like a wavy headband. He said they would remove the fused sagittal suture and also some other bone around the base of her skull. He would piece it back together with dissolvable plates and screws. It would take about 3 hours, she'd be in the ICU for 1-2 nights and then in the hospital for 3-4 more nights.  They would see her at the craniofacial clinic three weeks post-op and decide when she could return to daycare, usually within 4 weeks post-op. When we finally told him that we had no more questions he told us that he would dictate a letter to the insurance company and basically fight them to cover the surgery.  Insurance companies like to deny surgery for craniosynostosis because it requires both a pediatric neurosurgeon and a craniofacial (plastic) surgeon.  They try to claim that it is cosmetic surgery and is unnecessary.  We walked across the hall so that Dr. Miller could take pictures of her head. I anxiously laughed when he took out a Nikon SLR camera and snapped photos.  I thought he meant xrays.
Dr. Puccione came in about a half an hour after Dr. Miller left.  He came in, shook our hands, talked to Adeline a little and then told us she definitely required surgery.  He was charismatic and his compassion helped assured me that he wanted the best for Adeline. He felt her head and showed us parts of her skull that were abnormal.  I felt each part as he explained it.  He was surprised that she wasn't more fussy than what she was.  I told him that she had been more fussy in the past 6 weeks, and had been getting up at least once during the night, but we always blamed it on teething or having a cold. He said that he could tell that there is pressure on her brain, and it was might be causing headaches. She has frontal bossing - her forehead is starting to protrude due to the pressure from the brain.  Right now there is a good chance that mother nature will fix this herself, but if we do not do surgery soon there is a possibility that she will have to have a second surgery.  I think in some way my medical mindset overtook my motherly feelings.  She was my baby girl, but she was also now the most important patient I have ever cared for in my life.
We agreed to plan for Adeline to undergo The Dallas Remodeling Procedure. http://www.thecraniofacialcenter.org/synostoses_treatment.html
After a very detailed explanation and a lengthy question and answer session, Dr Puccione asked how we were feeling.  I told him that, honestly, we thought that we would walk out of the clinic with a plan to only use helmet therapy.  He apologized and said that he just assumed that we knew because her case was so straight forward.
When our meeting with Dr. Puccione was finished he sent us to the radiology department for a CT of Adeline's head.  She feel asleep before the CT tech brought us back for the scan.  She looked so sweet and vulnerable lying in the big camera.  She was an angel, the CT tech said she couldn't believe it went that smoothly.  She was pretty pessimistic when the clinic called her to do a CT of the head of a 5 1/2 month old without sedation, at 5 o'clock in the afternoon.  Being a Nuclear Medicine Technologist, I knew exactly what she meant.  But now I was on the other side. It was surreal that my daughter was undergoing a radiological exam.  I spent my pregnancy trying to minimize her exposure to radiation while I was at work and now in seconds she received many times more radiation then I did the entire time I was pregnant.