WICHITA, Kan. (KSNT) – For a 2 year old, Grace Venneman knows more about hearts than most of her age.
The playful toddler points to mother Laura Venneman’s breast.
Laura replies, “Yes, Mama’s heart, Grace’s heart” and points back to Grace’s chest.
Grace was born a healthy full-time baby in August 2018. It wasn’t until her eight-week check-up that her pediatrician raised concerns that Grace wasn’t growing as fast as she needed to be. The family tried various tactics to get her to eat.
In November 2018, Grace was hospitalized and x-rayed. It was found that she had an enlarged heart.
Laura and Grace
“We had no idea and none of our family members have heart problems or defects that they are aware of,” said Laura.
The family was taken to Children’s Mercy in Kansas City. Grace was diagnosed with “ALCAPA” (abnormal left coronary artery from pulmonary artery), a non-genetic defect out of 300,000 heart defects.
Grace underwent open heart surgery within 24 hours of hospitalization. She was three and a half months old.
In February 2019, Grace’s heart wasn’t getting the right blood it needed to pump to the rest of her body. Her cardiac team discovered that she had a severe coronary artery stenosis.
“Even if it had been in the right place initially, it probably wouldn’t have pumped her blood,” Laura said.
A stent could not be placed because Grace’s heart was so small. The hope was that her heart would develop more certainties to deliver blood, but they never did.
By March 2019, Grace was placed on a transplant list.
The family waited five months for a donor heart to become available.
“It passed quickly. It really did. Because every time we had a doctor’s appointment, her heart function kept getting better, ”said Laura.
Grace improved to the point where Laura began to wonder if they were making the right decision about the transplant.
When her transplant took place on 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 during the operation.
“And I said, ‘Oh, we’re good. ‘We just made the right decision. It was very sad. The way it was, it was last week, it was black in spots. My husband says it looks like it has been dropped off a building, ”said Laura.
Within a day of the transplant, Grace started moving again. Within a week she was in her cot.
Grace is in their cot in the hospital with father Brian.
Now Grace is an active girl who loves horses and plays with big sister Kaydence. The family stays home mostly to protect Grace’s delicate immune system.
The family participates in Heart Walk in Wichita and Kansas City and celebrates all of Grace’s milestones. On the first anniversary of their transplant, they held a butterfly release in memory of the donor who gave Grace a heart.
Laura wants an echocardiogram after a baby is born, but could be insured before it leaves the hospital. An echocardiogram would have captured Grace’s heart problem.
“I’ve had several sonograms, but because the coronary arteries are so small, you can’t see them. And many of them, many of our ALCAPA babies … none of them are diagnosed in the womb. It’s always when someone has problems and has problems finding them later, ”said Laura.
Unfortunately, a heart transplant isn’t an eternal cure. Grace continues to be monitored and, according to Laura, “definitely” needs to be transplanted again.
“Your body realizes that it’s not you. And it’s either in denial where they’re going to need a new heart or coronary artery disease, ”Laura said.
Meanwhile, Grace undergoes monthly labs here in Wichita and travels to Kansas City every three months to visit Children’s Mercy. She also has a strict medical plan.
A sign of Grace’s journey hangs in her nursery: a strand of pearls depicting every needle stick, feeding tube, medical transport, blood transfusion and other experience that was part of Grace’s heart journey.
“Blue,” said Grace, running her fingers over the several feet of strand.
“Yes, blue!” Sister Kaydence assures her.
Grace was the featured guest for the American Heart Association – Kansas Heart Ball in February.
For information on heart transplants, see Click here. Understand your risk for congenital heart defects. Heart healthy recipes from the American Heart Association.