WICHITA, Kan. (KSNW) — For a 2 year old, Grace Venneman knows more about hearts than most her age.
The playful toddler points to mother Laura Venneman’s chest.
Laura responds, “Yep, mama’s heart, Grace’s heart,” pointing back at Grace’s chest.
Grace was born a healthy, full-term baby in August 2018. It wasn’t until her eight-week checkup that her pediatrician raised concern that Grace wasn’t growing at the rate she needed to. The family tried different tactics to get her to eat.
In November 2018, Grace was admitted to the hospital and upon an X-ray, it was discovered she had an enlarged heart.
“We had no inkling and none of our family has any heart conditions or any defects that they’re aware of,” Laura said.
The family was transported to Children’s Mercy in Kansas City. Grace was diagnosed with “ALCAPA” (anomalous left coronary artery from the pulmonary artery), a one in 300,000 heart defect that is not genetic.
Within 24 hours of being at the hospital, Grace underwent open-heart surgery. She was three and a half months old.
In February of 2019, Grace’s heart was not getting the right blood it needed to pump to the rest of her body. Her heart team discovered she had severe stenosis coronary artery.
“So even if it was in the right spot initially, it probably wouldn’t have pumped her blood,” Laura said.
A stent couldn’t be placed because Grace’s heart was so tiny. The hope was her heart would develop more collaterals to supply blood, but they never did.
By March 2019, Grace was put on a transplant list.
The family waited five months for a donor heart to become available.
“It went by fast. It really did. Because every time we had a doctor’s appointment, her heart function kept getting better and better,” Laura said.
Grace improved to the point Laura began questioning if they were making the right decision about the transplant.
By the time her transplant took place July 31, 2019, Grace’s heart team knew the dilemma in Laura’s mind and decided to show her a photo of Grace’s old heart mid-surgery.
“And I was like, ‘Oh, we’re good.’ We just made the right decision. It was very sad. Like it was, it was last week, it was black in spots. My husband says it looks like it was dropped off a building,” Laura said.
Within a day of the transplant, Grace was moving again. Within a week, she was standing in her crib.
Now, Grace is an active girl who loves horses and playing with big sister, Kaydence. The family largely stays home to protect Grace’s delicate immune system.
The family participates in the Heart Walk in both Wichita and Kansas City and celebrates all Grace’s heart milestones. On the first anniversary of her transplant, they held a butterfly release in memory of the donor who gave Grace a heart.
Laura wishes for an echocardiogram after a baby is born, but before they leave the hospital, could be covered by insurance. An echocardiogram would have caught Grace’s heart problem.
“I had multiple sonograms, but because the coronary arteries are so tiny, you can’t see them. And a lot of them, a lot of our ALCAPA babies…none of them are diagnosed in utero. It’s always when someone has problems and are struggling that they may find it later,” Laura said.
Unfortunately a heart transplant is not a forever-cure. Grace will continued to be monitored and “definitely” have to have another transplant according to Laura.
“Her body recognizes that it’s not hers. And it’s either in rejection, where they will need a new heart or coronary artery disease,” Laura said.
In the meantime, Grace undergoes monthly labs here in Wichita and travels to Kansas City every three months to Children’s Mercy. She’s also on a strict medicine schedule.
A token of Grace’s journey hangs in her nursery: a strand of beads representing every needle stick, feeding tube, medical transport, blood transfusion and every other experience that was part of Grace’s heart journey.
“Blue,” Grace said, running her fingers over the strand which is several feet long.
“Yeah, blue!” sister Kaydence assures her.
Grace was the featured guest of the American Heart Association – Kansas Heart Ball this February.