If I become pregnant “again" will my next child also suffer from craniosynostosis? By Margie Alvarez & Gian Carlos Gierbolini

"Parents of Gian Carlos Gierbolini"

I asked myself this question when they told me that Gian Pablo needed an operation for his Craniosynostosis,a condition that we didn’t have a family history of. He was our first son and the first grandson in our family.During the course of Gian Pablo’s operation, I asked lots of questions and found out that in some families it affects many of the children and spans generations,and in other families it is an isolated condition, like in our case. If I have another baby, how do I know it won’t happen again? But, I became pregnant again when Gian Pablo was only 11 months old. Just 5 months after he’d had his Craniosynostosis operation. I didn’t have time to think about or consider this so that I could decide whether to get pregnant. My other baby was already on its way.

The first question I had for my gynecologist was “Gian Pablo has Craniosynostosis, how do I know if this baby has the same condition? Is there any way to see it in a sonogram?” The answer was NO; you can only see it in the last weeks, and even then only in very severe cases. What calmed my husband and me was seeing Gian Pablo’s rapid recovery and how well his operation went. Only God would know how our next baby would be born. I had to wait, and those nine months of waiting were very long.

When Natalia was born, the first thing I looked at was her head, to see if I could see anything different about it. Everything looked OK and I thanked God, because the baby wouldn’t have to go through this experience. For the first few months, I looked at her head constantly to be sure it was growing well. My experience with Gian Pablo’s Craniosynostosis made me uneasy about other babies’ heads. I can’t help but look at a baby’s head to see if it has some deformity, and if I see one, I ask myself, could it be Craniosynostosis? Should I tell the mother, or would that be bad?

As a mother, I can’t help but wonder why Gian Pablo was born with this and what the cause is. I wonder about the future, and about whether his children will have the condition. All I can do is wait, and hope that with advances in science and the work of the Jorge Posada Foundation, someday we’ll know what causes Craniosynostosis.