Last month, the U.S. Senate unanimously passed a resolution by Sen. Jeff Sessions, R-Alabama, designating April 2015 as National Congenital Diaphragmatic Hernia Awareness Month. April 19 was recognized as the International Day of Congenital Diaphragmatic Hernia Awareness in 60 countries. So far this year, 29 states and 25 cities have followed suit -- including Anchorage and Soldotna, where mayors Dan Sullivan and Nels Anderson declared awareness days.
Most people have never heard of this birth defect, yet it is as common as cystic fibrosis and spina bifida. Congenital diaphragmatic hernia (CDH) is when the diaphragm does not form correctly or completely, leaving an opening allowing abdominal organs into the chest cavity, which leaves those tiny lungs little room to grow and develop. This occurs in 1 of every 2,500 births, and a heartbreaking 50 percent of these babies will not survive. The 50 percent that do survive will endure complex surgeries, significantly extended hospital stays and potentially lifelong medical issues.
My family and I were affected by this frightening defect last year. At a very much anticipated 20-week ultrasound to find out the gender, we were given the horrific news that our baby girl had a "rare defect" of right-sided CDH. At that point, her liver and gallbladder were up in her chest. The liver is one of our larger, more solid organs, which meant this wasn't a small hernia. We were told this could be paired with a chromosome disorder; she may not be compatible with life. Different options were given as to what to do next.
I simply couldn't wrap my mind around all of this. So the fight began. Beyond this condition, she was a beautiful healthy baby girl. I sought the best possible prenatal care. I was even sent to Seattle to meet with the surgical team from both UW for the delivery and neonatal surgeons from Seattle Children's Hospital. The medical team did its best to explain how hard it is to predict how her lungs will function once she is born. The medical team explained that even with today's technology, ultrasounds only exhibit so much. Knowing how her little lungs would actually perform on her own was an entirely different story. This gave me hope! It was such a breath of fresh air to feel that these doctors felt confident in their plan and professional ability to allow me to bring my baby girl home. In the meantime, I had regular ultrasounds to ensure things hadn't progressed poorly. At 36 weeks I was transferred to Seattle to wait for her big day.
Paislee Grace Mears was born Oct 21, 2014. She was placed on my chest for a few moments, then quickly taken to the heated table to be intubated and hooked up to a ventilator to help her stabilize. She surpassed their expectations quickly, and was transferred down to the NICU. Paislee's doctor ordered a chest x-ray and blood work to get a better idea of what they were dealing with.
Nearly all of her organs had worked their way up into her chest, leaving her with nearly no lung tissue. She could not supply her body with the oxygen she needed, which in turn caused her body chemistry to be far from where it should be. Tests were repeated, each time revealing no progress. Paislee earned her wings after a tough 7-hour fight.
It is my duty as a mother to an angel to help spread awareness of CDH. I hope to have you stand by me in my effort to spread awareness. With awareness comes research, and hopefully a cure someday. I would not wish any other parent to have to endure this heartfelt struggle.
Visit cdhactionday.org for more information.
Jillee S. Brown was born and raised in Anchorage. She makes ribbons for CDH awareness and campaigns for research into finding a cure for the birth defect.
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