A big word for a small baby. Our son was diagnosed with a condition called saggital craniosynostosis at 3.5 months old. It was actually overlooked by our pediatrician. Even after we brought it to her attention, she seemed unconcerned. Needless to say, we have moved to another doctor for our tater baby. So, if not from our doctor, how did we discover Archer had a birth defect?
I had been going to the chiropractor for prenatal visits starting around the middle of my second trimester, for hip pain. She had told me that after my baby was born, she would do his first visit for free. We discussed the pros of chiropractic care for aligning baby after descending through the birth canal, help with breastfeeding, digestion issues, and sleep. Chance & I had met our deductible, so we decided to go ahead and pursue chiropractic care for our newborn. I can't say it's helped with sleep (sadly), but she was able to align a jaw issue he had, which was effecting his breastfeeding on one side. I had been in a lot of pain and thought something must be wrong with MY body, resulting in a bad latch or positioning. Turns out, he had a tight jaw on the left side, so he was unable to open as wide when latching. I could tell a difference that night after his first visit. I was sold!
So, we have continued to see the chiropractor, Dr. Bell, each week, or every other week, since Archer's birth, four months ago. We had noticed Archer had a funky dome, but babies have weird heads, and we didn't spend a lot of time evaluating their shapes for the "norm". Archer also would not really allow us to touch his head much, even since birth. He always seemed very sensitive and would cry when we rubbed his head or attempted to put on a hat. Because of this, we never really feared "touching the soft spot" or feeling around on his noggin'. We just assumed he didn't like his head touched. Combine that with all his other temperamental oddities and it didn't strike us as unusual in the least. On September 30th, when we went in for our chiropractic appointment, Dr. Bell felt along his head and said "hm. when is the last time you saw the pediatrician?" I happened to have gone in the week before for his never ending baby acne. She continued to feel his head and had me feel a ridge along the top. She noted that we should go see the pediatrician because it could be a suture that has fused.
Huh?
I had never heard of sutures. It hadn't crossed my mind that my baby's skull would close up too soon. That's a thing!? So, I of course asked, "What if it is?" Dr. Bell didn't act overly concerned, but said that it would require a surgery, that would of course not be fun, but was routine enough that babies handle it really well and are completely fine postoperatively. We left that day a little on edge, and of course, as usual, Archer cried the whole way back home in his car seat. My mom talked to me on the phone and was very adamant about me not googling it before seeing our pediatrician. I actually didn't until a few days later. Then I saw the photos of other babies with saggital cranio and I was 99% sure that Archer had this same birth defect.
Why had I never heard of it?! Why had so many doctors overlooked it? Why had so many pediatricians blown off other parents' concerns about their babies head shape? Why did I know more about this condition from Dr.Google than my physician, who I paid to look out for this type of thing?
Craniosynostosis effects 1/2000 babies, starting within the womb. While it can be caused by a syndrome, it is most often isolated, which is the case for us. It is not in our genetic history, at all, on either side of the family. Our doctors assured us that there was nothing we could have done to cause or prevent it. It's a condition that researchers have not been able to determine a definitive cause. It just happens. Had my chiropractor not spoken up, we may have waited too long for the less invasive, endoscopic surgery. While still a major surgery on the skull, it did not require an ear to ear cut, like the more invasive, cranial vault reconstruction. The CVR surgery is highly effective and requires no helmet therapy, but it's not handled as well by babies and almost certainly requires a blood transfusion. Our doctors at Duke were thrilled that we made it *just in time* for the endoscopic procedure. Archer was diagnosed by the chiropractor on 9/30. Confirmed by xray on 10/7. Confirmed by the nuerosurgeon on 10/22. Underwent endoscopic craniectomy on 11/4. Needless to say, it all happened VERY fast.
In the next few days, I will post up our story of the surgery. In the coming months, I intend to follow up on our helmet therapy journey, as well. I hope that any mommy who is scouring the internet after a diagnosis, or a gut feeling that something is amiss will find this blog and feel less alone. While this is a shocking condition to find out your baby has. It is treatable, and your child will recover faster than you would even recover from a procedure at the dentist.
For more information on our surgery, visit:
http://www.thetp.org/article/view/4165/5039
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