Craniosynostosis Awareness/Appreciation Month!

Our youngest, Carolyn Hope, is a cranio baby. If you don’t know a lot about craniosynostosis, you can read more about our experience here.

Cara’s pediatrician identified abnormal facial structure just after her birth in late May 2014, and we began the diagnosis process immediately. Standard DNA testing came back normal, but we were referred to a geneticist “just in case” who diagnosed Cara with bicoronal synostosis in October 2014. A CT confirmed the diagnosis last November, and we met with the cranio-facial surgical team at The University of Missouri in Columbia. On March 11, 2015, Cara underwent a 10-hour procedure (including 2 hours of surgical prep!) called a cranial vault reconstruction (CVR), where the front and top portions of her skull were removed, reshaped, and replaced. Her surgeons also moved her brow bone forward with a frontal orbital advancement (FOA) in order to protect her eyes.

If you’ve followed our journey, you know how resilient Cara is and how fortunate we were to have capable medical professionals who diagnosed her early, gifted surgeons who performed such a specialized surgery, compassionate nurses who cared for her (and me!) during recovery, and an extensive support system who loved us, prayed for us, and supported us during the whole process.

We are happy to report that Cara has met all of her developmental milestones thus far, and though we are pursuing further genetic testing to determine whether her cranio is a random occurrence or part of a genetic syndrome, we know we are blessed.

Diagnosis wasn't easy and handing our 9-month old to an anesthesia nurse was maybe the hardest thing I've ever done. But we've said from the start that the experience and her scar (Evie calls it her "scarf") is a testament to an amazing God and is evidence of a powerful faith journey we do not regret walking.

September is Craniosynostosis Awareness/Appreciation Month. Generally, Craniosynostosis occurs in about 1 in 2,000 births. Left un-diagnosed and untreated, it can result in vision and hearing loss, developmental delays, seizures, and other long-term health problems, so early diagnosis is important!

If you feel so led, please share our story and/or donate to a worthy cause like this one or this one.