How we discovered our baby had Craniosynostosis

How did we discover that our baby has Sagittal Craniosynostosis? 

Two Thursday's ago we took Ry to get an  MRI because she has a y shaped gluetal cleft (which means her butt crack goes into a Y shape instead of an I shape) She also currently has a flat bruise like hemangioma about the size of a nickel on her butt, at the base of her spine area.  Both of those things can be an indicator that there could be a tethered spinal cord or another spinal issue. She has other hemangiomas but the pediatrician was only concerned if they appear in specific areas, and one of those to be concerned about is the area around the spinal cord. So they suggested we get an MRI to rule out any spinal cord issue.

After her MRI we went to meet with a pediatric neurology doctor. She told us her MRI results were negative! yay! Which means that she does not have any issues with her spinal cord. However at that appointment we learned a new word that unfortunately will be part of our life now. Craniosynostosis. She looked at RyK and said she was concerned because her head was narrow. (I had noticed that her head shape was different but nothing looked severe. I thought she just had a more oblong shape, kinda weird but no big deal, I thought) Then she felt her head, Ry has a ridge that is vertically across on the top of her head, and she told us that with that ridge and her head shape that our baby most likely has craniosynostosis, but that we would need a CT scan to confirm that infact her sutures are fused per-maturely. (Babies are supposed to be born with all sutures open, and with visible soft spots. However RyK already had one suture closed. Which isn't supposed to happen until she's almost an adult and her soft spot was only around for a short amount of time) We immediately took her down to radiology to have a CT scan done. However just like her first attempt at an MRI she couldn't stay still. Which meant we were unable to get results that day. So on May 6th we took her back to CT to go under anesthesia again for a quick 5-10min scan. That same day the pediatric neuro doctor called us and confirmed that she does in fact have saggital craniosynostosis. And that brings us to tomorrow, when she will have her cranial vault reconstructive surgery. I will be keeping her facebook page  updated if you would like to know how things are going with her surgery and recovery!
-Amanda

Comments

  1. UnknownMay 12, 2014 at 10:24 PM

    Thank you for posting! This must be very scary. I will think positive good things for her and the family. Stay positive...so sorry I never got back to u the other day.

    ReplyDelete
  2. UnknownMay 12, 2014 at 10:26 PM

    This comment has been removed by a blog administrator.

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  3. Sue HarrisMay 12, 2014 at 11:23 PM

    All will be well, Rylen has the best parents and team of doctors.

    ReplyDelete

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