In addition to all of the ups and downs a newborn brings, we have one more thing to contend with. Luke has a condition called Craniosynostosis. It will be fixed next month with surgery on his head. We have undergone a crash course in this condition and describe it in a Q&A format to follow:
Q: What is Craniosynostosis?
A: Babies’ skulls are very soft and moldable, which allows for them to navigate the birth canal, and then provide the rapidly-growing brain room to grow. The bones of the skull are connected by tough, flexible tissues called sutures. There are several of them, and they eventually harden into bone as the skull matures, by age 5. Craniosynostosis results when one or more of these sutures hardens prematurely.
Q: What is the big deal when the suture fuses too soon?
A: Several things could happen. The most common issue is that the brain can’t grow in its normal shape, so it pushes the head out where the sutures are open. The result is that the baby's head can become badly mis-shapen. In more severe cases, the growing brain doesn’t have anywhere to go and pressure develops in the brain cavity. Thankfully, Luke doesn’t have this type.
Q: How common is this?
A: It’s not common at all. Only 1 of 2,000 babies have this condition. Luke has premature fusion of the Sagittal suture, which is directly at the top of his head, running from just above his forehead straight back to the back of his head. It is the most common form of craniosynostosis.
Q: How is it fixed?
A: Surgeons perform a craniectomy. They literally will cut out the portion of his skull that is affected. They will also do some other things to free up the space for his brain to grow, but the removal of the fused suture is the crux of the surgery.
Q: It sounds awful! Are you scared?
A: Yes, of course we are.
Q: Will this impact his brain?
A: No. The brain is sealed in a tough pouch called the Dura. This surgery is on his skull and they don’t plan on puncturing the dura.
Q: How long is the surgery?
A: Less than two hours.
Q: When is the operation?
A: November 16th.
Q: How long will he be in the hospital?
A: Three or four days.
Q: Where is it going to be done?
A: At UCLA Medical Center. We are fortunate to have so many great facilities to choose from. We visited with surgeons at Children’s Hospital of Orange County (CHOC), Children’s Hospital of Los Angeles (CHLA) and Loma Linda before settling on UCLA. They were all excellent, but we felt the best about the team at UCLA.
Q: Will he need a blood transfusion?
A: There is a very large blood supply to the head, so he will likely need a transfusion. The good news is that he has the same blood type as me (O+), so I will be donating as much as he needs.
Q: What is the prognosis for recovery?
A: The success rate for this procedure is excellent. Other than a scar on his scalp that will soon be covered by hair, nobody should ever be able to tell he’s ever had anything done. Someday we will tell him about this scary adventure during his first few months of life.
Q: He got sick and had to spend a week in hospital when he was a newborn. Is this condition related to that illness in any way?
A: Not at all. This is a condition he was born with. That was a random bug that made him sick for a few days and went away. Probably came from his sister (thanks, Grace!). In some ways it was a blessing, because we took the opportunity to ask the neonatologists at the hospital about the shape of his head, and by the time we brought him home, we had a referral to the surgeon who diagnosed his condition.
Q: When and how did you first notice this?
A: He was born via C-section, and I noticed the minute he was born that the shape of his head wasn’t quite right.
Q: Is there any risk of developmental impact?
A: There are some types of craniosynostosis that are connected to developmental syndromes, but thankfully, Luke does not have that type. He should be just fine.
Q: Is this a genetic condition?
A: Not likely. There is no family history on either side.
Q: Then what is the cause?
A: We don’t know. There are several theories but none have ever been proven in a proper study. Everyone keeps telling us we are just lucky.
We appreciate all of the prayers and kind wishes. We will keep everyone posted after we get home right before Thanksgiving.
Q: What is Craniosynostosis?
A: Babies’ skulls are very soft and moldable, which allows for them to navigate the birth canal, and then provide the rapidly-growing brain room to grow. The bones of the skull are connected by tough, flexible tissues called sutures. There are several of them, and they eventually harden into bone as the skull matures, by age 5. Craniosynostosis results when one or more of these sutures hardens prematurely.
Q: What is the big deal when the suture fuses too soon?
A: Several things could happen. The most common issue is that the brain can’t grow in its normal shape, so it pushes the head out where the sutures are open. The result is that the baby's head can become badly mis-shapen. In more severe cases, the growing brain doesn’t have anywhere to go and pressure develops in the brain cavity. Thankfully, Luke doesn’t have this type.
Q: How common is this?
A: It’s not common at all. Only 1 of 2,000 babies have this condition. Luke has premature fusion of the Sagittal suture, which is directly at the top of his head, running from just above his forehead straight back to the back of his head. It is the most common form of craniosynostosis.
Q: How is it fixed?
A: Surgeons perform a craniectomy. They literally will cut out the portion of his skull that is affected. They will also do some other things to free up the space for his brain to grow, but the removal of the fused suture is the crux of the surgery.
Q: It sounds awful! Are you scared?
A: Yes, of course we are.
Q: Will this impact his brain?
A: No. The brain is sealed in a tough pouch called the Dura. This surgery is on his skull and they don’t plan on puncturing the dura.
Q: How long is the surgery?
A: Less than two hours.
Q: When is the operation?
A: November 16th.
Q: How long will he be in the hospital?
A: Three or four days.
Q: Where is it going to be done?
A: At UCLA Medical Center. We are fortunate to have so many great facilities to choose from. We visited with surgeons at Children’s Hospital of Orange County (CHOC), Children’s Hospital of Los Angeles (CHLA) and Loma Linda before settling on UCLA. They were all excellent, but we felt the best about the team at UCLA.
Q: Will he need a blood transfusion?
A: There is a very large blood supply to the head, so he will likely need a transfusion. The good news is that he has the same blood type as me (O+), so I will be donating as much as he needs.
Q: What is the prognosis for recovery?
A: The success rate for this procedure is excellent. Other than a scar on his scalp that will soon be covered by hair, nobody should ever be able to tell he’s ever had anything done. Someday we will tell him about this scary adventure during his first few months of life.
Q: He got sick and had to spend a week in hospital when he was a newborn. Is this condition related to that illness in any way?
A: Not at all. This is a condition he was born with. That was a random bug that made him sick for a few days and went away. Probably came from his sister (thanks, Grace!). In some ways it was a blessing, because we took the opportunity to ask the neonatologists at the hospital about the shape of his head, and by the time we brought him home, we had a referral to the surgeon who diagnosed his condition.
Q: When and how did you first notice this?
A: He was born via C-section, and I noticed the minute he was born that the shape of his head wasn’t quite right.
Q: Is there any risk of developmental impact?
A: There are some types of craniosynostosis that are connected to developmental syndromes, but thankfully, Luke does not have that type. He should be just fine.
Q: Is this a genetic condition?
A: Not likely. There is no family history on either side.
Q: Then what is the cause?
A: We don’t know. There are several theories but none have ever been proven in a proper study. Everyone keeps telling us we are just lucky.
We appreciate all of the prayers and kind wishes. We will keep everyone posted after we get home right before Thanksgiving.
