Congenital Heart Defect Awareness Week

Published: 2/03 12:00 am

Updated: 2/16 11:46 pm

NEDROW, NY (WSYR-TV) - For months, Krystal and Edward Peters have been asking the state for help teaching parents about the signs and symptoms of the birth defect that lead to their nine-month old daughter's death.

In response to the Peters' lobbying, Governor Andrew Cuomo proclaimed February 7th - 13th, 2013 to be "Congenital Heart Defect Awareness Week."

The Peters hope next year, the awareness week will be recognized nationally. They are also pushing for a state law to mandate that hospitals administer a simple pulse-oxygen test before babies leave the hospital.

To honor her daughter's memory, Krystal Peters says she will always continue to spread awareness.

"I promised her that I wouldn't let her go with nothing. If she was here for no other reason other than for us to get awareness out then that's what we're taking out of this. That's what we want," said Peters.

CNY family pushes for new test for babies 2/3/13

NEDROW, NY (WSYR-TV) - After the death of their 9-month-old daughter, a Central New York family is calling for changes in state law.

Krystal and Edward Peters lost their daughter Kaylin in December of 2012 to a form of congenital heart disease.

To raise awareness, they started an online petition, asking Governor Andrew Cuomo to proclaim February 7^th-14^th, “Congenital Heart Disease (CHD) Awareness Week.”

"I can't think of any other family going through what we're going through, I mean the heartache and everything that's going on I can't put that on anybody," said Edward Peters, Kaylin's dad.

Just days after Kaylin’s birth they knew something wasn't right when her breathing became labored.

"She was turning blue, she was falling asleep while she was feeding," said Krystal Peters, Kaylin's mom.

Kaylin was diagnosed with a congenital heart defect that causes low oxygen levels in the blood. At just four weeks old she had her first open-heart surgery, followed by rounds of hospital visits and medication.

"She had feeding issues because she was so little and she couldn't get used to the bottle. When they put the tubes in her throat she couldn't learn how to suck and swallow at the same time so we had to feed her through a tube," said Krystal Peters.

As the months passed, things did start to get a little better.

"In December they [doctors] put her in for a heart catheter, where they go in through her groin and take pictures of her arteries and her heart. They said it was perfect, her shunt looked great and everything was fine," said Krystal Peters.
But on December 19, 2012 that all changed.

"We went home the next day and the day after she passed," said Krystal Peters.

Kaylin died from what doctors believe was a heart attack.

"It just leaves a hole. There's no fixing this. You can't fix somebody missing," said Krystal Peters.

Despite the pain, it is now their mission to make sure this doesn't happen to anyone else.

Through their online petition and their push for a state law that mandates a simple pulse-oxygen test before babies leave the hospital, they hope to save more lives.

"These are for babies that can't speak, talk or fight for themselves they need to be spoken for this is our future we have to take care of it," said Edward Peters.

Their online petition has reached more than 4,000 signatures. They still need about 16,000 in five days for the Governor to review their request.

If you would like to learn more about the petition and a fundraiser in memory of Kaylin, click the links below.

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