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Craniosynostosis

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I had initally decided against sharing our daughter's recent diagnosis with the world in attempt to protect her from unecessary speculation and prying eyes but my husband's counsel is that the more people are aware, the more people can pray alongside us.  

At 28 weeks, I had an ultrasound in the radiology clinic at Womack and like the total nerd that I am studied every aspect of my baby during the appointment. I was bothered by her head measurement (measuring several weeks smaller than the rest of her body) and the ultrasound tech's seeming lack of experience. (She assured me that nothing was wrong. "Her head is just low.")

At my next appointment with my midwife I asked to read the ultrasound report. There was no acknowledgment of the odd date differences or of an abnormally small head. I broke down crying and told the midwife that it wasn't good enough. I needed another opinion. I wanted my baby to be seen by a specialist. The midwife agreed that if it would "put me at ease" I could see the maternal fetal medicine specialist for a 2nd level ultrasound, though she reminded me that the radiologist had reviewed the ultrasound images too and he hadn't found anything wrong so she felt assured everything was fine. 

A couple of weeks ago, I went to the MFM appointment pretty convinced that my hormones were making me crazy and Avery was indeed just way head down like the tech had theorized. Plus, I'm not a medical professional, just a silly mom, right? I was elated to see her in 4D and even more excited when the sonographer exclaimed, "Your baby has SO MUCH HAIR!" 

Then a perinatalogist came to tell me what he'd discovered.

Craniosynostosis: an extremely rare condition where the sutures of the skull which normally don't fuse until later in life prematurely come together. Her head was measuring over two weeks behind her body because it was indeed too small as I had detected during the previous ultrasound, restricted from proper growth by her own skull. Initially, the doctor only found evidence of one suture having fused. We were sent to the MFM clinic at UNC for further testing where they discovered that BOTH of her coronal sutures have fused. 

Bilateral coronal synostosis: a more complex and even more rare form of craniosynostosis most commonly associated with a list of syndromes... Crouzon's, Apert's, etc. We were devastated. 

We've had subsequent appointments and ultrasounds and as of yesterday, the perinatat Womack feels there's still a good chance that Avery doesn't have the syndromes associated with her diagnosis. He is hopeful that this was simply a spontaneous fusing of the sutures though we won't know anything for sure until after she's born. From what we can see, however, she is measuring normally everywhere else. 

Moving forward, in the next week or so the NICU team at Womack will assess whether or not they feel equipped to handle Avery's diagnosis after birth (if she is born with a syndrome there may be unexpected complications) deciding whether I can deliver at Womack or whether I'll have to deliver at UNC (an hour and a half away- NOT PREFERABLE). The doctor believes she is still able to tolerate a natural birth but will be monitered with weekly NST's and MFM follow-ups to ensure she doesn't begin to show signs of stress. 

Once Avery is born, with a syndrome or without, she'll require surgeries, the first of which is usually performed in the first 8-12 weeks after birth when the bones are most formidable. The surgery will be performed at UNC where they'll disconnect the fused skull sutures hopefully allowing for a more normal head shape/size. It may be one surgery, it may be several. 

Our best case scenario is that God performs a miracle while Avery is still in utero and she's born in perfect condition. If that doesn't happen, we're praying that this was a spontaneous fusion and there is no syndrome associated with her craniosynostosis; that we would be paired with the best pediatric neurosurgeons at UNC; and her surgeries would be minimal and as non-invasive as possible. 

Whatever the outcome, I know that God is not surprised by this, He doesn't make mistakes and there is grace for this path that He's laid out for us. He is always and only good and loves Avery more than I ever could. 

If you feel led to pray for our daughter we would be so grateful! 

xoxo  

Meg  

P.S. I do plan to resume blogging at some point... It's just way down on the priority list. Hehe.  

P.P.S. I would suggest NOT googling the pictures that accompany the diagnosis I mentioned above. Some of the images are a little rough. 

 

 

 

 

 

 

Snapshots

28+ weeks