“On December 19, 2017, I went in at 39 weeks pregnant to have our third child. We currently had 2 boys and had a seamless pregnancy with our upcoming daughter who was going to be our Christmas baby. I was excited to be home in time for the holidays as a new family of 5. The C-section went great, the doctor delivered with no problems, and Elliana Faith (“Ellie”) came out quickly and with no issues, or so we thought. My husband Kevin held Ellie for a minute, but I was unfortunately too out of it with extra sedation medicines that I did not get to hold her before, all of a sudden, they whisked her away to the NICU. When my meds finally wore off and I was coherent again, the doctor told me I would get to see and hold Ellie within an hour or two — that she just had some fluid on her lungs which was very common after a C-section, and she simply needed a little extra oxygen and would be fine.
Well, oxygen is actually not what Ellie needed. Fast forward 7 weeks. By this point, we had spent Christmas and New Year’s in the NICU, our daughter had remained lethargic, and her breathing was extremely shallow.
Emily Boedeker
When Ellie arrived by ambulance at Arkansas Children’s the evening of her birth, her CO2’s were so off the charts that she immediately got intubated. Honestly it is a miracle she did not die or at the least have brain damage on the way to Children’s because it became known to us after weeks and weeks of testing that Ellie would have an extremely rare genetic disorder called Congenital Central Hypoventilation Syndrome (CCHS), which is a neurological disconnect where the brain does not communicate to the body to sufficiently breathe, especially while sleeping. There are only 1,200 known cases of CCHS in the entire world. We were told by doctors that CCHS is a cousin to SIDS, Sudden Infant Death Syndrome.
Emily Boedeker
Basically, Ellie quits breathing when she sleeps, and even while awake, sometimes her CO2 levels get very high. Based on what Ellie is doing, she breathes in oxygen just fine but doesn’t blow out the carbon dioxide. There are many different variants of CCHS, and every case is different. Thankfully, Ellie’s case is on the mild side, however, we knew getting this diagnosis would be life-altering. We were so hoping and praying that she simply needed some more time to breathe better on her own — that perhaps her lungs simply needed a little more time to develop, that maybe the meds from my sedation had gotten into her system and were affecting her longer than normal, or something. Our sweet Ellie, who breathed just fine in my womb and kicked and moved around like a Karate kid, was now being told that something was extremely wrong, and if this genetic testing came back positive, we would be faced with a life change we were totally not expecting.
