Family fights to keep girls with rare heart disease healthy

Fundraiser online for Corbesatos of Shelton

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Isabella and Ava Corbesato have had five heart surgeries between the two of them.

Isabella is two and Ava is eight months old. They both have hypoplastic left heart syndrome, a congenital illness where the left side of the heart does not develop completely.

“It’s very rare to have one child with it, let alone two,” said the girls’ mom, Nicole Corbesato. “Basically they were born with half a heart.”

Shelton-Corbesato-girls2-FITreatment for the girls can’t just be done at the doctor’s office down the street. The family has had to travel from Shelton to Columbia Medical Center in New York, and many trips to Yale-New Haven Hospital. Although the family has health insurance, Nicole had to leave her job because taking the kids to the doctor was becoming a full-time responsibility.

She said that every time they are in the hospital in New York, it’s $30 a day to park. They’ve been there a lot lately because Isabella had open heart surgery on Aug. 5 and is still recovering.

“One of us has to be with her at all times because of her age,” Nicole said. “I would never leave her here by herself.”

To help cover co-pays and other expenses family and friends have set up a fund-raising page on GiveForward.com under Isabella & Ava Heart Fund. To date, they have raised nearly $8,000, but that’s under their $50,000 goal.

Also during this process, Nicole has been posting personal accounts of what she and her husband have gone through. You can also view these on GiveForward.com.

 

Early days

Dad PJ, with daughter Isabella.

Dad PJ, with daughter Isabella.

Nicole and her husband PJ found out about Isabella’s illness during Nicole’s 22-week anatomy scan while she was pregnant.

“We were just so shocked because we have never heard of this before,” she said. It didn’t really sink in until the Corbesatos went to specialists and found that nothing could be done to help their little girl.

The couple got options of what they could do. Surgery that might help, and the doctors did suggest terminating the pregnancy.

“Especially with our first [child] … we are going to give her every chance that we can,” Nicole said.

Isabella was born at 39 weeks during a planned induction, but she was not breathing. That isn’t atypical from children with hypoplastic left heart syndrome.

“She was taken from me right away and rushed to the transitional NICU,” Nicole said. A NICU is for children needing intensive care. The first time the new parents saw their baby was in a picture.

Isabella had her first open heart surgery at three days old.

 

The second baby

Ava with her mom Nicole.

Ava with her mom Nicole.

The Corbesatos were shocked again when they heard their second girl would have the same struggles as Isabella. It was a rare disease after all. Nicole said that medical science “is not there yet” to definitively say what causes the illness.

Doctors “described it as trying to find a needle in a haystack,” to what exactly causes the defect, Nicole said.

“I think at the first ultrasound I was numb,” she said about finding out about Ava. “We went back and forth for awhile,” about how to proceed with the pregnancy. “Ultimately, we decided we would give her the same shot as Isabella.”

Ava was also an induced birth as well.

“She was born pink, screaming and crying,” Nicole said. It was a stark difference than with Isabella.

 

Carrying on

“They palliate the right side to do the job of the right and the left,” Nicole said of the multiple surgeries.

Ava will have to undergo more surgeries like her sister to help make her heart strong.

This most recent surgery with Isabella was quite difficult, Nicole said.

“This one has been the hardest by far, because she understands” more of what is happening, she said. “She’s very brave and very strong, but every time it breaks our hearts.”

A transplant isn’t in the near future for the girls, but it could happen any time. Like so much of what causes this disease, it’s hard for doctors to say when it will be needed.

“They don’t immediately go to that because they don’t last forever,” there is a risk of rejection and child donors are rare, she said. However, many children with the illness are in their teens and still are living with the rebuilt heart.

Right now Nicole said her and PJ’s girls are doing fine. They play and are hitting the milestones in their development.

“If you didn’t see their scar … you would never know that anything is wrong with them,” Nicole said.

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