Craniosynostosis

Now there's a word you don't hear every day - and one, you unfortunately don't want to hear. Rick and I are grieving this week after a disappointing appointment at Children's Hospital today. We met with a neurosurgeon and learned that our sweet Lucy has craniosynostosis. What this means is the sutures separating the right and left plates of her skull have fused together prematurely. There is not much known as to why this happens in some babies, but it does and is likely in her genetic makeup. The only cure for this condition is surgery (sigh).

These are words a parent never wants to hear - especially when you're a hormonal woman with a two week old in your arms! Now while we digest this news, we have a huge decision to make. We must decide which surgery Lucy should have. We have two options. One is performed at around three months of age and is less invasive surgery. It may require a blood transfusion (babies have very little blood, so there's a 25% chance she would need more blood.) The hospital stay for this one is one or two days and following surgery Lucy would be fitted for a helmet to help reshape her head- and would wear this helmet 23/7 until one year of age.

The second option is a more invasive surgery. Lucy would have this surgery at around six months of age and the neurosurgeon would work with a plastic surgeon to reshape the skull. It would definitely require a blood transfusion and would be a longer hospital stay. There would be no helmet with this surgery, but it is more involved and she would have a much larger incision.

Uggh. The decision is tough since there are good and bad options with both surgeries. We have some time before we make the decision and we are praying and weighing our options. It's difficult to talk about- my heart is breaking for this sweet innocent little girl right now. It's been an emotional and stressful day, but we're doing our best.

The good news is she should have a normal healthy life once this is corrected. It's merely cosmetic and opening the sutures will allow her brain room to expand and grow. Still scary nonetheless, but we are counting our blessings. Since we're not sure what the coming months will bring we ask for your prayers, love and support. And maybe a few extra hugs!?

Thanks in advance for your love,
Rick, Laurie, Caroline, and Lucy & our families