Wednesday, April 9, 2014

Skull Surgery

Last Monday was our first experience at Children's National Medical Center in DC. We met with Dr. Keating, the neurosurgeon who would be doing Henry's surgery. Of course we were nervous, but we knew that this is what needed to be done. I'm sure that compared to all of the other surgeries that Dr. Keating performs on a regular basis, this would be considered minor. But still, when it involves your 3 month old baby, it is all very scary.

At the pre-op visit, Dr. Keating measured Henry's head and calculated the ratio of width to length (cephalic index) as 67. Anywhere from 75 to 83 is considered "normal". The goal is that the surgery and further natural head growth will eventually bring Henry into the "normal" ratio range. It will also ensure that he will not have any intracranial pressure in the future, and that his brain will continue to grow normally. After Henry's physical and his blood work all checked out, we were given the go ahead for the surgery. It still didn't feel real. 

We arrived at the hospital bright and early on Thursday morning for the surgery. We received a thoughtful care package from Cranio Care Bears. My favorite item that they sent was a prayer chain made of ribbons with different inspirational quotes and verses on it. We ended up hanging it on Henry's hospital bed and it somehow made the experience a little more cheerful. I also loved the teddy bear with a bandage on his head.

I was surprised how happy Henry was that morning, considering that he was not allowed to eat for the past 9 hours. He is such a good-natured little guy. I held back all of my emotions as I dressed him into his tiny surgery gown and handed him over to the surgeons. It was all in God's control, as it always is.

I can't express how relieved I was when Dr. Keating came out and told us that Henry did just fine in surgery. But then I saw our swollen baby, looking so helpless, being wheeled from the operating room to the PICU. It completely broke my heart, but I felt so thankful at the same time.

Henry did remarkably well with the surgery itself and also with the recovery. He did have some swelling in his face on the first and second days, and he ran a fever on the second day. But aside from that, his incision was looking great and they sent us home on the third day. He has been a little cranky since we have been home, compared to his usually laid-back self, but for the most part, it doesn't even seem like he just had surgery!

Special thanks goes to my Aunt G, who stayed with Ryan for the first day and night, and also the second day, so that Barry could be with us in the hospital. Barry went home for the second night while I stayed there with Henry. 

Ryan has been asking about the "boo boo" on Henry's head. He says to him, "Don't worry Henry, it will go away after a long time". It is endearing to see the concern that Ryan has for his baby brother. He has such a tender and loving heart. I am so proud of our big boy AND our little boy.

So... I can honestly say that the cosmetic results were better than we had even hoped for. I was shocked to see how round Henry's head looked immediately after we took the bandage off. Supposedly, his head should continue to grow in an even rounder shape in the upcoming months/years. I am very curious (and hopeful) to see what it looks like in the future. I think that it looks amazing already! In the pictures above, you can clearly see the dramatic difference. I must admit that I have never thought so much about a person's head shape in my life.

God has truly answered our prayers by protecting our sweet baby and giving him strength to get through the surgery and recover quickly. This was such a humbling experience.

*UPDATES: 3 Weeks Post-Op*

Henry continues to do well and he is just as happy and laid-back as ever. At our 3 week post-op appointment today, Dr. Keating gave him an "A plus" for head shape! The surgery results really ended up being better than anybody expected.

*4 Weeks Post-Op*


  1. So glad everything went well! I was praying hard for little Henry. You are seriously a rockstar Dana - and my personal hero! Thanks for sharing!

  2. @The Bobos- You are too kind! Thank you for your prayers and thoughtful messages. I hope that you and your sweet girls are doing well! xo

  3. I wish I had run across your post a few weeks ago. My daughter also was born with craniosynostosis. Her affected area was the right coronal suture and was quite significant. She had surgery at 4 and 10 months due to the location of the closed suture and it's affect on the formation of her eye socket on the affected side. She will be 16 years old in 11 days and is a beautiful and intelligent young lady. I am sure that your Henry will also be an amazing young man. On a side note, I also had breast cancer when my youngest son was an infant. I am a 9 year (and counting) survivor. What a crazy coincidence! Prayers and blessings to you and your family.

  4. Amen!!! I am so glad. God is so good!

  5. @Kate R- Wow! Thank you for your comment. That is wonderful that your daughter is doing amazingly well AND that you are a 9 year survivor!!!! Your words are so encouraging to me! I hope that I can say the same thing in a few years. =)

    @Alana Stanton- Thanks! And yes He is!!!!


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