Liby Peterson has a lot of beads. Six hundred and ninety-eight, to be exact.
She has red beads, purple beads, even glow-in-the-dark beads. But two beads – her handmade, glass-heart bead and a bead shaped like a house – stand out.
Liby, of Butler County, was born on Nov. 9 with hypoplastic left heart syndrome, a congenital heart defect that affects normal blood flow through the heart.
Since then, she has received a blue bead for every appointment, a black one for every needle poke, glow-in-the-dark beads for each echocardiogram and a yellow bead for every overnight stay in the heart center of St. Louis Children’s Hospital.
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Because Liby’s heart was so malformed at birth, her parents, Josh and Jill Peterson, learned she was not a candidate for a normal heart repair.
Children’s Mercy Hospital had attempted to stabilize her heart with stents and bands, but because her case was too risky, she was sent to St. Louis on Dec. 19 and then placed on the transplant list, said Pirooz Eghtesady, chief of pediatric cardiothoracic surgery and co-director of the heart center at St. Louis Children’s Hospital.
“Her risk benefits were in favor of a transplant,” Eghtesady said.
But her aortic arch had to be reconstructed for transplant, making an already-tricky newborn transplant even more complicated. Only 22 heart centers in the world do more than 10 infant heart transplants each year. St. Louis Children’s Hospital has one of the largest pediatric heart transplant programs in the nation.
“It was such a nerve-racking process,” Jill Peterson said. “Even just getting on the transplant list is a lot. We just had a baby and then going through all that – it was just a lot to have to handle.”
Liby received her new heart and her heart-shaped bead on Feb. 25 after a 12-hour surgery, and her heart now beats to a strong and healthy rhythm.
Her parents love listening to Liby’s new heart, but sometimes they listen to a recording of her old heart’s beat to remember what came before.
On Feb. 19, a nurse helped the Petersons record Liby’s heartbeat, which had a murmur, into a “Heart Beat” animal. But not just any animal. They chose a bunny, because Josh Peterson calls Liby his little bunny.
And they had no idea that six days later, Liby would receive a new heart.
“I remember saying, ‘OK, we did this, so now it’s time for her to get that new heart,’ ” Jill Peterson said.
She said the timing of Liby’s heart transplant was nothing short of a miracle.
“We get to cherish her old heart and know her new heart works so much better,” Jill Peterson said. “I can’t wait for her to be able to hear it. It’s going to be amazing for her.”
As of Sunday, Liby was one of only 40 infants who have received a new heart in 2017 while under the age of 1, according to the United Network for Organ Sharing.
“I know she is going to be able to overcome anything since she has already gone through more than most of us will ever have to do in our life,” Jill Peterson said. “Liby will be able to do anything she puts her mind to.”
While in St. Louis, the Peterson family met a 15-year-old boy from Hays who also received a heart transplant.
“He was so proud,” Jill Peterson said. “He is exactly who I hope Liby to be when she gets older – proud of what she went through, just like he is.
“Those beads tell her story of what she went through – of how many pokes she went through – and she will continue to receive these beads of courage for the rest of her child life.”
Liby’s follow-up appointments take place at Children’s Mercy in Kansas City, where she was first diagnosed.
The beads sit in a decorated, jumbo-sized, pink toy bottle, and two beads mean the most, Jill Peterson said: the bead Liby received when she got her new heart and the house-shaped bead Liby got when she was allowed to come home.
“There is nothing like being home with Liby after what she went through,” Jill Peterson said. “We can’t express how much of a miracle this is that St. Louis saved our baby.”