by Christie Kornegay
with Clellie Allen
WAKE FOREST — Meet James and Christie Kornegay, a Wake Forest family who just welcomed into the world their second daughter, Eveyln “Evie” Ruth, Tuesday.
James is an assistant principal at Franklin Academy high school and Christie is a physical therapist. While the birth of any baby is a time for joy for an expectant family, little Evie’s start in life has been fraught with dangerous complications.
In March, the Kornegays received news that changed their lives. A routine ultrasound showed Evie has a birth defect known as Congenital Diaphragmatic Hernia (CDH). This condition occurs when a baby’s diaphragm does not completely form during early development. The hole left in the diaphragm allows organs in the abdomen to float up into the chest, restricting the growth of the lungs.
When these babies are born, they need immediate breathing assistance, a surgery to repair the defect, and months of care in a neonatal intensive care unit.
Even with new treatment techniques, the national survival rate for CDH is around 50 percent. It’s a condition as common as both Cystic Fibrosis and Spina Bifida, but does not demand the same funding or public attention.
A little known fact for some is that Wake Forest is also the home to the largest CDH organization in the world. CHERUBS, a 20-year-old non-profit organization, has been located on White Street for three years.
“We were shocked to find out we lived only two miles from the CHERUBS’ office. It felt like we had found a light in the darkness,” said Christie Kornegay. “CHERUBS has been such a great support to us since our diagnosis. We now know there is hope for babies with CDH.”
CHERUBS Founder and President Dawn Torrence Williamson says CDH is actually common enough that there are a number of local families affected by the condition.
“We know of four families here already in Wake Forest who have been affected, but this is the first expectant family that we have encountered,” Williamson said. “It makes it especially unique that we already had a connection to this family before the diagnosis”.
CHERUBS learned about the Kornegay family just a few weeks after Williamson met James Kornegay’s brother-in-law at a local BNI networking meeting above the Wake Forest Coffee Company. Williamson spoke about CHERUBS’s work with CDH-affected families and just three weeks later, received a late night call that CHERUBS’ services were needed here at home.
Evie hit another bump in the road in early April, when it was discovered she was going into heart failure.
“At that point, we were told by our local doctors that she wouldn’t make it to birth, and to prepare for the worst. We were out of options,” said Christie. There are few hospitals in the country that specialize in CDH due to it’s rarity. The Children’s Hospital of Philadelphia (CHOP) is a leader in treatment of CDH and boasts survival rates of 80 percent, much higher than the national average.
The doctors at CHOP were able to give the Kornegays a final chance at saving their baby. For James and Christie, this meant dropping everything and moving to Philadelphia.
In late April, Evie successfully underwent in in-utero surgery at CHOP to relieve stress on her heart.
“She has done so well over the last 12 weeks since her surgery. I can’t believe we have made it to full term. We still have a long road ahead of us, but these doctors were able to give us hope for our daughter,” said Christie. “CDH is an uphill battle, but Evie is already a fighter. We have faith that God has a plan for our daughter. She has already taught us so much in her short time with us.”
While wanting to wait as long as possible to give birth to allow Evie time to put on weight, she was delivered by emergency c-section Tuesday when doctors determined her heart condition had reached a critical stage. She weighed 8 pounds 10 ounces and is currently in stable condition, according to Williamson who was given permission by the family to give updates on Evie’s health.
“Evie is currently on a heart-lung bypass machine (Cardiopulmonary bypass or CPB), which is common in the sickest children with CDH,” said Williamson yesterday (Wednesday). “She is stable, but CDH is an hour-by-hour medical condition. If she stays stable, then doctors will try to wean her off the CPB before she has more surgery. They may do surgery while she is still on CPB if she’s not stable enough,” she said.
Evie will likely face a long stay in the hospital and at least one surgery before she can come home. She and her parents will remain in Philadelphia until Evie is strong enough to head back to Wake Forest.
Family and friends of the Kornegays have set up a website for updates on Evie and to raise money for the family’s extra medical expenses which can be found at www.youcaring.com/medical-fundraiser/baby-kornegay/323810. As of press time, more than $10,000 had been donated.
To learn more about CDH, CHERUBS and how you can help see the CHERUBS’ website www.cherubs-cdh.org
“We hope our story goes beyond us. We believe Evie is here to make a difference in the world, even before she is born,” Christie said. “We want to use this platform bring awareness to this horrible condition and to support a great local organization.”