Guest Story- Harry's Craniosynostosis Journey

10 weeks before my daughter had her surgery, 13 month old Harry underwent his cranio reconstruction. With Harry's mother's permission, I am thrilled to share some of his journey!

When Harry was born in January of 2013 his parents noticed a ridge on the top of his head and a longer and more narrow head shape. Those things made it difficult for him to fit in newborn hats, but having never heard of craniosynostosis before the family wasn't alarmed. It wasn't until 8 month old Harry was admitted to a hospital for gastroenteritis that a nurse noticed something was wrong. A scan then confirmed that Harry had Sagittal Cranosynostosis. Harry's 7 and a 1/2 hour  surgery was performed on March 12th, 2014 in the Great Ormond Street Hospital in the United Kingdom.

Harry recovered well and is doing great! He is now 2 and less than a month away from his 1st cranioversary! His parents, Amy and Charlie, have done an amazing job spreading awareness for craniosynostosis. They have raised money for the hospital and have been sharing their story in magazines and news articles.

     Before Surgery

  At the hospital


Before and After Craniosynostosis Surgery 
      Harry at 2 years old, almost a year after surgery
              Some of the amazing ways that Amy and Charlie have been spreading awareness



Keep updated with Harry's journey by liking his facebook page 
https://m.facebook.com/profile.php?id=681984618489101




Comments

Post a Comment

Popular posts from this blog

How we discovered our baby had Craniosynostosis

How did we discover that our baby has Sagittal Craniosynostosis?  Two Thursday's ago we took Ry to get an  MRI because she has a y shaped gluetal cleft (which means her butt crack goes into a Y shape instead of an I shape) She also currently has a flat bruise like hemangioma about the size of a nickel on her butt, at the base of her spine area.  Both of those things can be an indicator that there could be a tethered spinal cord or another spinal issue. She has other hemangiomas but the pediatrician was only concerned if they appear in specific areas, and one of those to be concerned about is the area around the spinal cord. So they suggested we get an MRI to rule out any spinal cord issue. After her MRI we went to meet with a pediatric neurology doctor. She told us her MRI results were negative! yay! Which means that she does not have any issues with her spinal cord. However at that appointment we learned a new word that unfortunately will be part of our life now. Crani
Read more

Rylen's Sagittal Cranial Vault Reconstruction Surgery Recap

Image
Yay! Today, May 20th marks one week since Rylen had surgery to correct her skull. I wanted to write this for us to remember, for other cranio families who want to know what to expect and for RyK if she wants to know what her surgery was like. On Tuesday May 13th  we arrived at Oakland Kaiser at 6am. We were checked in and sent to pre-op. There they gave her some "happy juice" and daddy turned into the funniest guy around. We handed her off to a  nurse about 8am. Then we waited for our first phone call. At 10:20 her nurse called to tell us they had made the first cut, at 12:45 he called again to say she was doing well and they would begin to close. At 2:20 he called and told us to be waiting in the lobby for the surgeons to arrive. Finally around 3:00pm Dr. Pang and Dr. Zovickian came walking towards us. Everything went well and we could go to the PICU and see her! When we walked in we could hear her crying, we knew she woke up fighting mad. She was turning her self a
Read more

Is it because of craniosynostosis?

Image
Whats normal and what's not? I think that's a question every parent asks more than once during their child's lifetime. My, now 19 month old daughter, has developed certain physical aspects that I now find myself wondering "Would she have _______ if she didn't have craniosynostosis? Or is this something that most kids have? In my surveys I have asked if other parents have noticed their children having such "markers" as Hemangiomas, Y shaped gluetal clefts, and Mongolian spots. It doesn't seem to be that much more common in cranio kids then in the rest of the population. So I decided to google it. Here is what I found (let's hope this information is accurate) What percentage of babies have Hemangiomas?  Roughly 13% however about 80% of babies have some sort of birth mark? Mongolian spot?    95 to 100 percent of Asian, 90 to  95 percent  of East African, 85 to  90 percent  of Native American, and 50 to  70 percent  of Hispanic babies have them.  
Read more