Craniosynostosis Diagnosis

RebekahA83

Yesterday my 5 week old daughter was diagnosed with Craniosynostosis. From birth, I had noticed her head was longer and narrower in shape, but I've seen enough infant heads to know that there are a lot of funny looking heads out there. Her two day and one week appointment were uneventful. Between her one week appointment and yesterday's appointment, I felt a little uneasy about her head. What bothered me most was that I could feel a ridge down the center of her skull, and as an RN I knew that shouldn't be there.  At her 1 month appointment yesterday, her pediatrician felt it also and ordered a stat CT scan. Afterwards, he told us that she had craniosynostosis, and that this condition would require a major neurosurgery. Talk about stopping a mother's heart! We meet with the neurosurgeon on Thursday, and we aren't telling our families until after that appointment. My husband and I are so heartbroken. We don't know anyone that has had a child with this condition! I'm actually trying to avoid googling it too much because what I read scares and upsets me so badly. I know we will find out so much more information on Thursday, but that seems so far away right now! Can anyone lend some support or offer reassurance? Has anyone dealt with this personally or know someone who has? 

Brandi81012

I don't have experience as a mother with an infant who has it, but I am a pediatric RN in the PACU. Most babies do absolutely wonderful after the procedure, most of the surgeries last 2-3 hours with no complications. At the Children's hospital I work at it is usually a 1-2 day PICU stay then a couple days in intermediate care. Her face will be really swollen after surgery but that will go away. Good luck mama!

redselig

I have no experience with this but I wish you all the best during this possible anxiety inducing time. Take care  

RebekahA83

That is so reassuring to hear. Thank you for your response.  I have every hope that my baby will come through this a champion! It just hurts to know she has to go through it at all! 

imrachellea

No experience but many T&Ps for you and your little one. You got this mama!

Brandi81012

RebekahA83 said:

That is so reassuring to hear. Thank you for your response.  I have every hope that my baby will come through this a champion! It just hurts to know she has to go through it at all

You are very welcome, the neurosurg doctors that I work with usually do surgery around 6 months of age. And they do a zig zag incision so hair growth looks normal. Good luck!

BrittnyS10

So sorry you have to deal with this. I hope your appointment on thursday goes well. I'll keep you and LO in my prayers.

seasidesweete

Prayers for you and your little one

sparkledonuts

lurking from May board but I have a friend who's son just turned 5 months and was diagnosed with this a couple months ago .. he just had surgery about a month ago and everything went well he didn't have to wear a helmet or anything and no delays so far ! I hope this gives you hope prayers for you! 

RebekahA83

sparkledonuts said:

lurking from May board but I have a friend who's son just turned 5 months and was diagnosed with this a couple months ago .. he just had surgery about a month ago and everything went well he didn't have to wear a helmet or anything and no delays so far ! I hope this gives you hope prayers for you! 

Thank you so much for your reply. Successful stories give me so much hope! 

kdrn913

I work in the PICUas an RN and we see quite a few of these kiddos post op! They usually stay with us for a day and then head to a regular floor for the remainder. The baby's faces usually get super swollen by day 2. Pain is well controlled with iv and oral pain meds. They can usually start drinking once they wake up enough from surgery! If you have any more questions I'll try to reply

runningwild

I don't have experience with this either. But wanted to offer thoughts and prayers to you and your sweet baby.

ImpatientPatty

Sending  thoughts and prayers your way!

RebekahA83

kelseydsutton said:

I work in the PICUas an RN and we see quite a few of these kiddos post op! They usually stay with us for a day and then head to a regular floor for the remainder. The baby's faces usually get super swollen by day 2. Pain is well controlled with iv and oral pain meds. They can usually start drinking once they wake up enough from surgery! If you have any more questions I'll try to reply

Thank you so so much! We met with neurosurgeon today and will meet with craniofacial surgeon tomorrow. They are planning a cranial vault reconstruction. You've already answered a couple of my biggest questions (length of stay and eating). I am a cardiac ICU RN, but it is SO hard being on this side of things! I don't like it at all. Thank you for your encouragement. It really means so much to me. 

Thank you all for your thoughts and prayers. I have definitely needed them the past couple of days. You never want to hear something is wrong with your baby! We are lucky that there is a surgery that can fix it. Not every condition can be fixed and my baby's can. I am thankful for that.