Damian – Sagittal

My husband was the first to notice the ridge on the back of Damian’s head. He was 1 month old and we asked his pediatrician about it because it seemed pretty prominent. The doctor said that it was probably normal and that he would look at it during the next appointment at 2 months. We ended up making an appointment a few weeks earlier than that because my husband was deploying soon and we were worried. The pediatrician said that he doesn’t think it’s really anything to be worried about but referred us to Seattle Children’s Hospital craniofacial center just to be safe.

I started becoming nervous about it because the pediatrician said that he doesn’t really feel Damian’s soft spot and that the sutures might have closed prematurely and there’s a chance that he may need surgery to fix it. I went to the Seattle Children’s craniofacial center’s website and researched about the condition. I realized before the initial appointment that he probably needed surgery because he had all the signs and symptoms. I started wondering if it was my fault, especially since he was the second of my 3 kids who had a birth defect. My second daughter has intestinal malrotation and needed surgery when she was a month old. That’s a whole other story, though. So, I was anxious about the appointment at Seattle Children’s.

The way they do things there is that all the appointments are on Mondays and they put all your appointments with everyone (craniofacial pediatrician, social worker, both the plastic surgeon and neural surgeon and they get pictures). The craniofacial pediatrician diagnosed Damian with sagittal craniosynostosis just by feeling his head. They informed me that he was going to need surgery and that it would have to be done between 3-6 months. Even though I suspected he needed the surgery before the appointment, I was shocked and dismayed that it was true.

A few weeks later, in late May, they called me to set up an appointment. The date was set for the 12th of July. To be honest, I don’t know what was worse, realizing your child needs surgery at the last minute, like my second child, or having to wait a few months while his symptoms got worse. During the waiting time the social worker sent a request to red cross asking if my husband could be sent home during the surgery. We were surprised to learn that it was approved and that he would get to come home for 2 weeks.

Damian’s pre-op appointment was on the 2nd of July and that’s when we got the CT scan. Later in the appointment the plastic surgeon printed out a picture of Damian’s skull so that we could see how the suture was fused. We received the prescriptions for the special soap and stuff in the mail before the appointment that we were to use every day starting 3 days before the surgery. I just want to say that that stuff is a pain to wash a 4 month old with. Anyway, my husband got home on the 7th so we got to spend some quality family time before the big day.

The day of the surgery we checked in at 6:45am. He was taken, already sleeping, from my arms at around 8am and didn’t get to see him again until he was in the recovery room about 3 1/2 hours later. I was mortified when I saw the incision. The nurse told me it looked good but it looked horrifying to me. It took them a while to get him to the ICU and we settled in. He was only in the ICU for a night and then he was moved to the general inpatient floor.

His poor little face started to swell but it wasn’t at it’s worst until the 2nd day after the surgery. His poor little head was huge and his eyes were swollen shut. We were warned about this but even so, it was still hard. I hated seeing Damian in that condition. He was in a lot of pain and even when getting morphine it still hurt to move him at all, which made nursing a bit difficult. His swelling went down A LOT the next day and we were finally able to hold him without fear of hurting him, and the swelling was almost completely gone by the day after. He was only in the hospital for 5 days. We were discharged yesterday and he’s only been getting tylenol since. He’s still a little puffy but recovering quickly and in little pain. His incision doesn’t bother me much anymore but I’m still paranoid about every little.thing. It’s been a rough road but I’m glad it’s finally over. The picture attached is from day 4 in the hospital. Thank you for listening.