Baby with rare case of Noonan's in need of heart transplant

- Nikki and Dave McChesney’s dream of expanding their family is one they began to bring to life a decade ago.

“I never thought I wouldn’t have another healthy kid,” Nikki told Fox 9.

On Thursday, the McChesney’s sat inside the Ronald McDonald House on Oak Street in Minneapolis playing with building blocks along with their two healthy children, Grace, 10, and Alex, 7. Neither anticipated they’d be forced to move their lives there, nearly three hours away from their Benson, Minnesota home.

“We wouldn’t be able to be close [to Charlotte] if this wasn’t available,” Nikki said of their new addition, and the critical illness that’s led their relocation.

Charlotte McChesney was welcomed into the world on Feb. 3 at Children’s Hospital and was immediately diagnosed with a rare form of Noonan’s disease. Doctors told the McChesneys that Charlotte’s case is so rare it’s only the 11th reported case in the world.

What’s worse, Charlotte’s Noonan’s is so severe it has required she be intubated ever since. The six-week-old has what is considered a gene mutation that causes hypertrophic cardiomyopathy, which means her heart is abnormally thick. On Thursday, the McChesney’s were informed a heart transplant may be baby Charlotte’s best chance at a full life.

“It’s hard at night to pray that my baby makes it and I’m praying for someone else’s child to not make it then. It doesn’t seem quite right,” Nikki said.

“Usually in an average person when the heart squeezes to pump blood out there’s a little bit of blood left over, in her situation when her heart squeezes, it’s so thick that when her heart squeezes there’s no cavity left over, it just completely obliterates it,” Dr. Johnathan Johnson, the medical director of the pediatric heart transplant program at Mayo Clinic told Fox 9.

Charlotte’s case is one of the worst the pediatric cardiologist has ever seen.

“It’s definitely in the top ten,” Johnson said. “It’s a very thick heart. It’s really tough for the heart to have blood flow into it and blood flow out of it.”

Cases of hypertrophic cardiomyopathy like Charlotte’s also have among the lowest survival rates.

“She’s struggling and it’s hard to watch her struggle,” Nikki said. “You can’t just scoop her up and hold her like you want to.”

Both Nikki and Dave have been forced to abandon their jobs to cherish every moment of Charlotte’s life.

For now, the McChesney’s two other children are enrolled in school at the Ronald McDonald House. There the family is housed, fed and supported. Families experiencing critical illness of a loved one at a near by hospital, on average, stay at that particular Ronald McDonald House for 150 days.

“In 150 days a lot can happen and your bills are still piling up,” Amy Avent, the vice president of development and facilities at Ronald McDonald House Charities told Fox 9, “We’re happy to provide a comfortable caring place to be during this difficult time.”

“I don’t know what we’d do without it,” Nikki said. “We’re able to be a family and be together.”

Charlotte will undergo evaluation at the Mayo Clinic starting Friday. Over the next week The McChesney’s will learn if the infant is a good candidate for a heart transplant.

If specialists learn the transplant will not put her in danger, Charlotte will be placed on the transplant list. But, she may have to wait up to six months for a new heart.

If she does receive the miraculous gift, Dr. Johnson says she has a 95 percent chance of making it out of the hospital.

A GoFundMe has been set up for Charlotte and her family. Click here to learn more. 

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