Three days later, the family was jolted with unexpected news: the baby was diagnosed with Hypoplastic Left Heart Syndrome (HLHS), a rare congenital heart defect.
As she approaches her 6-month birthday, little Kaylee already has undergone four surgeries and is now waiting for a heart transplant. Her health complications have led to overwhelming medical bills and time off of work for Anthony and Lisa.
To help the Krumms with Kaylee’s growing medical expenses, family and friends are hosting a benefit, “Kisses For Kaylee,” from 7 – 11 p.m. Friday, Aug. 12 at St. Veronica Church, 4473 Mt. Carmel-Tobasco Road, in Mount Carmel.
Organizers plan a fun-filled evening, with live entertainment, appetizers, beer, and soft drinks. The festivities will include a silent auction and a raffle featuring gift baskets and other prizes. Suggested donations at the door are $15 per person and $25 per couple.
According to Cincinnati Children’s Hospital Medical Center, HLHS is one of the most complex cardiac defects seen in newborns and is perhaps the most challenging of all congenital heart defects.
In patients with HLHS, the left side of the heart is severely underdeveloped, which seriously affects the heart’s ability to pump oxygen-rich blood throughout the body.
Usually HLHS is diagnosed during an ultrasound at around 20 weeks’ gestation. But Kaylee didn’t show any signs of heart problems until a couple of days after her birth. She became fussy, seemed colicky, and had trouble nursing. When her breathing approached 72 breaths a minute, she was taken to Cincinnati Children’s Hospital.
“Being in the emergency room, we had never heard of this,” Lisa said. “We were one of the few parents who had no idea. It was a complete shock.”
They received a crash course on the condition from another family whose child also had HLHS.
After the diagnosis was confirmed, Kaylee underwent a series of unsuccessful surgeries, including an artificial heart that her body couldn’t handle. Today she remains on a type of heart-lung machine at Cincinnati Children’s as she awaits a donor heart for a heart transplant – her only option at this point.
“It’s been a roller coaster ride,” Lisa said, adding that the baby also has experienced seizures and other medical issues associated with her condition.
Kaylee’s two older sisters – Mira, 9, and Evelyn, 5 – have handled their baby sister’s problems in stride.
“They actually have been great about understanding that Mommy and Daddy have to be at the hospital with (Kaylee),” Lisa said.
Lisa and Anthony are grateful for their strong network of support.
“We have had so many family members and friends help out with the kids,” Lisa said. “I know if we ever needed to turn to anybody, they would be there. Our prayers are our strength, and to know that so many people are praying for Kaylee….” The baby’s name is even on a prayer list in India, thanks to a friend who traveled to that country.
Those who would like to make a financial donation for Kaylee’s care or contribute an item to the silent auction or raffle for the Aug. 12 “Kisses For Kaylee” benefit are asked to contact Tina Wolfer (wolfer_t@westcler.org; 513-720-4697) or Jean Burke (jmwburke@yahoo.com). Financial donations can also be made at any PNC Bank; specify The Kaylee Krumm Benefit Fund.