Zander – Metopic

On May 15, 2011 our baby boy Zander was born. I was in labor for 73 hours (yes you read that right!) and he came into this world with a cord around his neck. Once the doc’s got him responding they noticed a large purple bruise that spanned from his Left foot up to his middle left buttock. They were so busy running the tests for that (which has turned out to be a port wine stain that can easily be treated with laser therapy), they seemed to miss what I saw when I looked at my son, a pointy forehead. I asked all the doctors at his clinic. They referred us to a specialist for his port wine stain. His head I was told would adjust itself. I kept waiting. Finally when Zander was 4 months old one of the doctors asked for me to get him a CT scan. Catch was we were moving that same day to another state. I promised myself and my son that we would find a family doctor that would listen.

When Zander went to see our family doctor, she immediately asked if I had noticed his head. I told her that was why I was here. She asked if I wanted a referral to UNC Chapel Hill with a pediatric plastic surgeon, to discuss helmet options. I said sure. I was so upset about the thought of Zander in a helmet I just went home and dreaded the visit. The big day came to go to UNC and see Dr. Gage. I had learned to accept the helmet idea and even thought we could do some things to design it so it was bad ass. Dr. Gage came in and was very pleasant. He told me about his 6 children and gave me a little of his background working with this type of Craniosynostosis. Then he said, “In most cases of craniosynostosis surgery is needed, and with Zander being Metopic, it is certain.” I felt like someone had walked up and slapped me in the face. My first questions consisted of mortality rate, pain level, and recovery. Dr. Gage took his time,reassured me it was more safe then it sounded (cranial vault reconstruction…..) and gave me a website as well as CAPPSKIDS.ORG to help coax me through this terrible news.

I came home, crying. Beyond upset is a poor description of what I was…I was so very scared, mad, and I felt like this must be my fault. I googled the printed words from the back of Dr. Gage’s business card….METOPIC CRANIOSYNOSTOSIS….thousands of images, videos, and links came up. I began to see this develop before my eyes. Watching babies go from little pointed heads, to swollen heads, back to round heads of perfection. I puddled into the floor and sobbed…this was going to happen. Once I finished feeling sorry for my son, myself, and praying, I got up, I got my information. I learned so much about craniosynostosis…not just Zander’s but all the other types. I learned about the complications, the recovery, I met some AMAZING support people and I saw that the kids and the parents come out of this with flying colors. I also made some personal connections with some “metopic mommies” who took the time to show me their child’s story. I went from feeling lost, alone, and terrified to educated, prepared, and yep….terrified.

The night before surgery we spent time as a family. My mother came to care for our 4 year old daughter and we laughed, giggled, and prayed. A few weeks prior we had gotten all the care packages, went to churches and had Zander prayed for and the other thing we did was add ribbons from 6-8 other churches to the chain we got from Cranio Care Bears. Zander and the whole family had an 8 foot prayer chain. We packed the bags, and we kissed Zander goodnight. I of course did not sleep a wink. The next morning we got up, dressed, and went to UNC. I felt like I was going to lose my stomach the whole ride. Walking into the hospital I held my baby boy as close as I could. I would not give him to anyone else. We checked in, we went back to pre-op and we met with all 3 residents that were going to be with Zander for the surgery, both Dr. Gage and Dr. Perry (our plastic/neuro team), the head of anesthesia and the man that would be taking care of Zander for his anesthesia, both of the doctors nurses, and the floor nurse for the operative room. Dr. Gage promised me that he would take care of my son as he would one of his own children. Somehow I knew he would. When the anesthesia team came and gave us the run down of what would, should, and could happen one of them took Zander (who was all smiles and joy the whole time) and let me kiss him bye bye. As they walked away, Zander turned over the mans shoulder and waved bye bye to me. I fell apart right there. Once those doors shut and I could not see my baby I lost it…my husband guided me into the waiting area where the next 6 hours were to be the LONGEST I have ever had. After the first 3 the operative nurse called me to update me. “Zander is doing very well, he has had to have a little blood therapy and the doctors are still working, but he is doing well it all look’s great.” After another 3 hours he called again to let me know Zander was getting stitched up and we would see the doctors soon. He reassured me my son was still doing well.

One hour after that final call, Dr. Gage walked in. He told me Zander did textbook well, that we would be able to see him real soon. We went to PICU waiting room and waited about 30 min. They came back and got us When we saw him he looked perfect. I still broke down in tears. It was hard to see him all wired up to things and having oxygen on. While he still looked just like my son…..he looked so very different. They had taken my baby boy from pointy head to the perfect round head of perfection. Such a huge change. The PICU staff was awesome and took the best of care. They even let me stay the night with my son. They answered all my questions, showed me how to take care of the incision, they allowed me to assist in bed changing, cleaning him up, adjusting him, feeding him, and they let me do as much as I wanted with his care. I never felt rushed with them, they always took time to talk to me and reassure me that while it is scary, it is normal. I can not say enough for the 2 amazing RN’s in that PICU. They helped ground me to where my head needed to be to take care of Zander.  The next day Zander was up to the regular recovery rooms where we stayed for 3 more days. Zander’s peak swelling was the day after surgery in the late afternoon. He was so swollen his ears had begun to fold in half. No one can prepare you for the swelling. It took 2 days before Zander would let me hold him without crying. But once he was in my arms and he smelled me….he laid his precious swollen head on my chest and he fell asleep. I cried then too. Night 3 was to be the most hope giving night for me as a parent. Zander could not see, and he was still very swollen….but he took his blanket and played peek a boo with us. Laughing and smiling….my happy prince. I knew from that moment that everything was going to be just fine.

We finally went home and the first night was pretty rough. I think Zander thought that since he was home, he should be able to see and by all rights he should have…but his eyes were still swollen shut. Yet, the next morning….2 little slits emerged, by that afternoon both eyes were open enough that he could see well. From there it has all been so good. He got right back on track eating by day 7 and while sleeping has been testy its only getting better and better.

We just went to our two week check up and Zander is healing so well. Nothing worrisome as of now. I never thought I would say it, but I feel lucky that we are on the other side. The support and love was amazing. I never felt alone. My doctor team was better then anything I could have dreamed of, and the fact that they were so humble for the praise and thanks really made them almost seem like angels to me. They fixed my son, supported our family emotionally, asked 1,000 + questions and Dr. Gage carried out his promise to treat my son like family. He even provided us his personal number in case we needed something. The PICU staff and the 2 nurses we had on the recovery floor who let me be hands on with Zanders care and took care of him as lovingly as I feel they would their own….right to the men and women in check in and check out, who assured us everything was going to be ok. UNC was amazing to us, and above all….the support groups I found for us, the amazing women who have shared their story. If I could say one thing it would be, its all going to be ok, you are not alone in this, and while you have the right to be scared beyond anything you can imagine, know that thousands of other moms have walked right in your shoes….and are reaching out to hold YOU and YOUR CHILD through this journey. It truly does feel SO good to be on the other side.