Commonwealth Journal

April 27, 2013

Local family at heart of new law

Commonwealth Journal

Somerset —

Kentucky Governor Steve Beshear earlier this month signed a bill into law that will require that all newborn babies be given what is called a pulse oximetry test — a painless, low-cost test that will catch several life-threatening congenital heart defects.
Somerset resident Kimberly Clark, mother of three, two of whom were born with serious congenital heart defects, stood by and cried as she watched Senate Bill 125 become law during the ceremonial signing on Wednesday, April 17 at Kosair Children’s Hospital. 
“I felt so relieved,” said Clark. “Every child now has a chance. Could you imagine going home with your baby and think it’s healthy, and then losing your child?”
That scenario, as horrifying as it is, does exist. Clark said often times serious congenital heart defects aren’t caught until after the baby has passed away. That’s why she and several others worked in February to campaign for a new law requiring the pulse oximetry test —a test that can increase a CHD baby’s  chance of survival to 85 percent, according to the Kentucky Cabinet for Health and Family Services. 
“A lot of people don’t realize babies can have a heart defect,” said Clark. 
Clark has been in that situation before. She has two young children, Austin, 7, and Aubrey, 5. 
Austin was born with a mild supravalvar pulmonary stenosis, which means one or more of the three leaflets located in the pulmonary valve of the heart that open in the direction of blood flow and close to prevent blood from flowing backward are defective or too thick, or the leaflets may not separate from each other properly. It wasn’t until Austin was nine months old when doctors discovered that he also suffered from severe supravalvar aortic stenosis — a narrowing of the aorta — which required open heart surgery. That surgery took place the day after Austin’s first birthday.
That surgery was Austin’s only open heart surgery. 
His sister, Aubrey, has undergone far more procedures.
Aubrey was born with several congenital heart defects, including pulmonary stenosis and aortic stenosis, which is what Austin was also diagnosed with. The news took Clark by complete surprise, as she’d been told it was nearly impossible that she would have another child with a heart defect. Aubrey underwent her first surgery when she was just two weeks old. To date, she’s had 11 surgeries. And in August, she underwent an exploratory heart catheterization procedure, after which doctors announced she seemed to be doing just fine.
And a third has joined their brood. Clark and her current husband decided to be tested for any genetic mutations that could lead to heart defects in their child. They received a clean bill of health, and now Austin and Aubrey have a younger brother, one-year-old Easton, who is a perfectly healthy baby boy. 
Clark counts herself among the lucky parents. She said she knows personally parents who have lost their children to heart defects that weren’t caught in time. The pulse oximetry test can alert doctors to a low blood oxygen level, a result of a malfunctioning heart, and steps can be taken to diagnose the baby quickly. 
“It’s a no-brainer,” said Clark. “It doesn’t hurt and it just takes a few minutes.”
The bill was sponsored by Senator Dennis Parrett, (D), who represents Hardin and Jefferson counties. Parrett, Clark and a third person, all of whom have dealt personally with CHD issues, testified before a special senate committee about the importance of a mandatory pulse oximetry test for newborns. The bill will go into effect on January 1, 2014. 
“Every baby in Kentucky will be tested,” said Clark. “ ... Before the baby leaves the hospital, it will have a pulse oximetry test.”
The age of social media has made it easier for Clark to keep up with families going through similar circumstances. The accessibility of these families’ lives, made so easy through Facebook, also helps foster a sense of community among “Heart Moms” and their families. 
When Clark follows a journey of a little one with a CHD, she feels it as if it were her own.
“I cry like it’s my child because I’m so passionate about this,” said Clark. “I’ve been there. I know what the parents are going through.”
And Clark said Somerset has its own fair share of parents and families affected by the untimely passing of a child with a CHD. That led her to help co-host a fundraiser in February for the Children’s Heart Foundation. She said the event was a huge success, and she’s looking forward to planning another event next year. 
And by February of next year, Senate Bill 125 would have been in effect for more than a month. 
“It (the bill) will make a huge difference,” said Clark.