Questions and Answers

I would like to address some of your questions that you have posed to me, so here goes. I will answer them to the best of my ability…

Q: Did you know before Spencer was born that he had this coronal synostosis?

A: No, we did not. Apparently this kind of condition cannot be seen in an ultrasound or in the blood work that is done during pregnancy.

Q: Do the doctor’s know when it happened?

A: No, they said it can happen early in the pregnancy or right before birth. There is no way of knowing.

Q: What causes right coronal synostosis?

A: So this is an involved question. Our understanding is all couples have a baseline risk of 3% to have a child with a birth defect that will require medical or surgical attention.
Non-syndromic cranio synostosis is typically a chance event that occurs as part of this background 3% risk.
Syndromic Cranio synostosis includes a group of conditions that can be inherited from a parent or start as a brand new condition in a child. These conditions involve fusion of multiple sutures and are associated with additional physical differences, commonly involving the face, hands, and feet.
Spencer has the non-syndromic one which we are thankful for and to quote the doctor “there is no rhyme or reason why this happens” it is a rare birth defect that occurs every so often and they still have yet to determine why.

Q: How long is the surgery and the recovery? 

A: We were told the surgery is about 4 to 5 hours long. There is a one night stay in the NICU to monitor the baby’s fluids and then usually a five day stay in the hospital to watch the healing and swelling. The baby’s eyes usually swell shut and remain so for about 4 days. Once the babies open their eyes they are sent home for the rest of the recovery. I’ve been told that the recovery at home is usually about another 5-6 days and then they return to their “normal” self. 

Q: Does unicoronal or right coronal synostosis affect the brain? 

A: Cranio synostosis is known to be a cause of increased intracranial pressure and children with one prematurely fused suture, such as unicoronal synostosis, demonstrate elevated intracranial pressure in 14% of cases. In Spencer’s case it does not affect his brain in any way. It is purely a cosmetic/aesthetic problem. Which we are also very thankful for!

Q: Is a blood transfusion necessary for this surgery? And can a parent or family member donate the blood?

A: Spencer will require 2 units of blood to be available for this surgery. In most cases they will use this blood. It has happened in the past that the baby did not require a transfusion but we are told this is very rare. Yes, we will have the opportunity to be a direct donor of blood if one of us meets the criteria. We have to be...

1. Compatible with Spencer’s blood

2. Healthy

3. Meet the criteria of the Canadian Blood Services

I thought that one of us would have to be a match for sure but apparently this is not the case. If we are not a match they will use blood previously stored by the Canadian Blood Service. They do not allow blood from family members only parents. Why this is I don’t know.  They said that is just the way it is. I am hoping that my husband is a match as I mentioned earlier in my blog, the Canadian Blood Service is not collecting or using female plasma so if my husband is a match Spencer will get all of his blood but if I’m a match he will only receive a part of it.