A new heart for Cora - Fund established to help defray family's medical expenses
SANDISFIELD - At first glance, Cora Barrett's day is familiar to any mother. The 4-year-old attends preschool, enjoys pretending to be older than she is, plays house and is a bundle of energy who can keep two adults busy.
However, Cora isn't like her peers - she's had five open-heart surgeries, evident by the scar on her chest.
"The first open-heart condition came when she was only two days old," her mother, Hannah, said.
Cora has a rare heart defect, known as hypoplastic left heart syndrome, which means the left side of her heart can't effectively pump blood to her body. She is alive because the right side of her heart has assumed pumping blood through her body following surgery.
Cora's blood oxygen level is at 70 to 85 percent, Hannah said, which is significantly less than others who have levels closer to 99 to 100 percent.
Two days after she was born, doctors performed a Norwood procedure, which transfers the left ventricle to the right-side of Cora's heart. The survival rate is 75 percent.
By the time she was 25 months old, Cora had had two more life-saving procedures. Her mother was told that would allow the youngest of her three daughters to live a normal life. There were complications, however, and Cora needed two more surgeries, in part because the heart's ventricle started to tear. She also needed a Pacemaker inserted.
Cora is now scheduled for a heart transplant later this year.
"Cora is an amazing, amazing beautiful girl," said her cardiologist Michael Willers, who was granted permission to talk by Hannah. "She has been through more than most people that are 110. She's done it with incredible grace and patience and a certain degree of inner strength, which is phenomenal."
With out-of-pocket expenses related to health care costs currently ranging from several hundred to several thousand dollars a month, a friend of the family has started a GoFundMe campaign to help raise money in anticipation of the transplant.
When the heart is made available, Hannah has been told Cora needs to be in Boston within four hours. Her husband, Patrick, will stay in Sandisfield with their other children, while Hannah and Cora will move to Boston, which was required by the transplant team.
Hospital officials told Hannah that Cora will need to be monitored on a regular basis to ensure her body doesn't react negatively to the heart transplant.
"They feel confident, statistically speaking, there will be a heart available to her," Hannah said.
Hypoplastic left heart syndrome is one of the most complex cardiac defects seen in newborns. However, as Hannah learned, children being born with a heart defect is not uncommon. According to the Stanford Children's Health website, about nine out of 1,000 children are born with a heart defect, and the reasons why remain a mystery.
Willer said Cora has had a lot of "tough luck." Cora will need to be carefully monitored following the transplant, but he said in general many children do fine.
"There is a lot of fear and understandably so about kids and heart problems ... ," Willers said. Generally speaking though, "kids with congenital heart disease live full, active lives."
On a recent weekday, Cora appeared as healthy as any child. The imaginative child was pretending to feed a plastic horse some plastic-shaped food, with an adult at her side. She dances the Hokey Pokey. She says she's feeling "good," and she says she enjoys preschool.
But Cora's life is far more complicated than those of her peers. The adult at her side is a physical therapist, who is trying to build strength and endurance.
"The stronger she is prior to [transplant], the more strength that she will have," Hannah said.
In the past year, Cora has been attached to a feeding tube when she goes to sleep to receive her nutrition; she doesn't eat with the family. Her endurance is lower than her peers. She needs to take about 10 forms of medications daily with 19 doses a day. Every other week, Cora goes to Boston, where she has her condition checked by a heart transplant team. In many ways, Cora is the same as any other child. She enjoys "Dora the Explorer" and she's prone to saying random phrases and shy around strangers.
But she was born with a heart defect.
"We have a lot of hope that this will end favorably," Hannah said. "We obviously have a long road before relaxation. We try to take small victories, like a day without throwing up or an outing with [the entire family.]"
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