In my blog post for Andie’s 41 week update, I talked about how we had been referred by our pediatrician to see a neurosurgeon at the Children’s hospital in our area. Soon after that referral was made, the neurosurgery department contacted us and said they wanted to cancel the appointment after reading notes on Andie and redirected us to pediatric plastic surgery, which is where our Orthotist and Physical Therapist had mentioned we may need to go for a consult.
We had our appointment on Friday afternoon and it was definitely a hard one. The doctor had us remove Andie’s helmet so he could examine her head while asking us several questions about how she was referred, etc. He of course made note of the area above her right eye but also said he could feel somewhat of a ridge on the top of her head on that right side. The combination of the two made him suspect that the suture in that part of her skull may have fused prematurely creating that ridge and then preventing that part of her forehead from filling in. If that is the case, it will be diagnosed as a form of synostosis, which is something that would have happened either before she was even born or shortly after. He said the ridge is not very prominent and wouldn’t have been caught earlier on as in most other cases (if that suture is in fact fused), but probably made her plagiocephaly a little worse.
We won’t know for sure if it is an issue with her suture or if it’s just plagiocephaly until a CT scan is done on her head. The scan itself makes us nervous already because Andie will need to be sedated via an IV in order to have it done. She also will not be able to eat for 6 hours before the scan but that’s the reason they usually schedule these scans first thing in the morning. After the scan is done and the doctor looks at the images, we’ll meet with him to discuss his diagnosis and what the next step will be.
He did tell us that if the suture is fused, Andie will have to undergo major surgery to correct it. Hearing that made me feel sick to my stomach. We did not expect to hear that when we walked into this appointment so I know Daniel was caught off guard just as much as I was. He explained that the surgery would be done by himself and a neurosurgeon and would take approximately 6 hours. The neurosurgeon would be removing pieces of bone where the suture is fused, creating gaps needed in order to allow her brain to grow and her skull to accommodate it, and our doctor (plastic surgeon) would be reshaping the skull in order to fill in the area of her forehead. She would likely need blood transfusions during the procedure because of the nature of the surgery as well. There will also be a scar running from one side of her head to the other but since she’s a girl, she will have plenty of hair that will hide that and eventually that scar will fade although it may not ever completely go away.
As far as recovery goes, Andie would stay in the hospital 3 – 5 days post surgery and remarkably, the doctor told us most patients begin returning to their normal selves after about a week. That just goes to show you how incredibly resilient children are! There will be a lot of swelling at first (understandable) and enough to prevent her from being able to open her eyes, which we’re told is what causes little patients the most anxiety because they can hear everything but can’t see what’s going on.
If, however, the scan reveals that there are no issues with any sutures and it is just plagiocephaly, we will be able to continue with “conservative measures.” This means we’ll continue with the helmet and she may need to wear it longer than we anticipated. BUT if after a period of time we are still not seeing any improvement, it is possible that we will end up having to get the surgery done anyways. Aside from this information–which is a lot to digest–we don’t know anything more. We will know a lot more after our CT scan which will hopefully be scheduled very soon.
Daniel and I have both shed tears over this and I think its mostly out of fear and shock. Never in a million years did we think this would even be something we’d have to deal with. We hate to think that our sweet little baby will have to go through a major surgery but we realize that it would be what is best for Andie provided we discover she will need it. It doesn’t stop me from feeling completely terrified but that realization helps. In the meantime, it would mean a lot to us if you’d join us in prayer–we’ll be praying for clarity, understanding, wisdom, courage, and of course, Andie not needing the surgery at all!
“Rejoice in hope, be patient in tribulation, be constant in prayer.” – Romans 12:12