On February 14th, 2019, my two-year anniversary with Drew, I spent over 10 hours at Phoenix Children's Hospital to learn how serious the congenital diaphragmatic hernia (CDH) that Sterling, one of our unborn twins, had been diagnosed with was. It was serious. As low as a 25% survival rate and that's IF he survived the heroic, but extreme, interventions to save him and the high likelihood of a months-long hospital stay afterwards and lifelong complications after that. After speaking with the specialists at Phoenix Children's and the head of the NICU at Flagstaff Medical Center, Drew and I decided to let Sterling pass in peace, surrounded by loved ones and hospital staff ready to save Sterling from any temporary suffering. Sterling never moved, never opened his eyes, and never cried. He lived for just over an hour, held by family. I think about him everyday. Back in Flagstaff, Drew and I didn't know anyone else who had a child with CDH. This Ladybug Run is the first event or group I've heard of where I will be able to meet people with my same experience. I am so looking forward to it. And the money raised goes to research and expenses, such as medical bills or, sadly, funerals, that families affected by CDH must face. Please consider donating to this cause in support of Sterling.
The Ladybug Run was inspired by the Race Director’s daughter Finley. At their 20 week ultrasound appointment on March 31st 2010 (ironically CDH Awareness Day), Liz and her husband were thrilled to get the news that they were having a second girl. That news was quickly overshadowed by the fact that the baby had a pretty serious complication. The baby had a left-sided congenital diaphragmatic hernia (this happens in one in about every 2,500 births) which means the diaphragm didn’t close entirely when it was supposed to and some of the lower organs (in this case; stomach, intestines, and spleen) were growing where they shouldn’t be. As a result, they were told, that the lungs wouldn’t grow to normal size and she was at risk for a laundry list of complications that ended with the statement that she had about a 40-50% chance of survival. Finley was in the fortunate 50% that survive. It took 19 days for her to stabilize enough for her to have her repair surgery and after 30 days more in the NICU, she was able to come home. Because this defect is rare and not heard of by most, it does not have the funding that other more widely known birth defects attract. All money raised by Ladybug Run goes towards research and helping families with a child with CDH in the hospital. (Hospital expenses average from $500,000 - $1M+, so some families are bankrupted by CDH). Many families travel thousands of miles to deliver at a hospital equipped to care for a CDH baby. This means incurring additional expenses of housing, gas, and food daily. Then, imagine those expenses and also having to cover a funeral? Or many of these fortunate children, who do come home, come home needing at-home nursing, oxygen support, feeding tubes, and numerous medicines. This Race helps those families. Your donation helps these families.
Ladybug Run uses funds to give gift cards for food and gas, help for for funeral expenses, gave care packages, and donates towards research to hopefully increase neonatal survival.
Every dollar counts.
