Ohio recognizes congenital heart defect awareness week
By CARLA MEYER
Four local families from Wapakoneta are ecstatic regarding a recent proclamation signed this week by Gov. John Kasich.
The week of Feb. 7-14 is to be designated as Congenital Heart Defect Awareness Week in Ohio — as Kasich signed the document this month.
Kasich noted thousands of children are born with birth defects every year, including approximately 40,000 children in the U.S. who begin life with one or more than 35 identified forms of congenital heart defects.
“It is crucial that parents, pediatricians, and all those in the health profession have a greater awareness of the potential for congenital heart defects among newborns and children,” Kasich wrote in the proclamation.
Local mothers who have children who were born with a heart condition are appreciative of the recent proclamation. A heart defect is the No. 1 birth defect with one of every 100 babies born with some form of a heart defect.
“It’s huge because not many people are aware of how important birth defects are,” Tara Stuttler, mother of 4-year-old Devin Stuttler, who was was born Oct. 29, 2007 weighing 7-pounds, 11-ounces.
Physicians diagnosed him with a severe heart condition known as Hypoplastic Left Heart Syndrome (HLHS) which most consider as having half of a heart.
The nurses at the hospital used a pulse oximeter to test Devin before Tara and Devin were sent home with his father, Alan, and older brother, Craig.
A pulse oximeter tests the oxygen level in the blood and if it comes back low, then this triggers for further testing.
After the results came back low, Devin was transported to Dayton Children’s Hospital, which revealed his condition.
From Dayton, he was transported to Nationwide Children’s Hospital in Columbus where he had his first surgery at only one week of age.
The Stuttler Family’s goal is to spread awareness of heart defects.
“Spreading awareness is the number one goal for us,” Tara said. “To provide funding, you need to spread awareness and funding provides research to find a cure. It’s how the medical world advances.”
Devin has undergone open heart surgeries as a young child, and now he is doing well.
“I never thought anything like that would happen to me,” Tara said. “It makes you realize how strong you can be as a parent.”
Jessica and Daniel Makuh’s daughter, Lauren, was diagnosed with the same heart condition.
Three-year-old Lauren’s left ventricle of her heart did not form properly in the mother’s uterus and she was unable to pump blood to her body.
As a result of her condition, Lauren was scheduled to have three surgeries to change the way her heart works.
Jessica voiced her pleasure with Kasich for announcing the awareness week for congenital heart defects.
“It makes me feel really good,” Jessica said. “I didn’t know anything about heart defects until Lauren was born. People need to be more educated about it.”
Education is key, and Jessica now shares her story with other mothers going through the same situation, and she also learns from other families who have gone through the same process.
Lauren will have her third heart surgery in June.
“Devin and Lauren have the same heart condition,” Jessica said. “They weighed the same, they both were taken to Dayton Children’s Hospital and they both have the same pediatrician.”
Tina and Jon Walp also have a child, Nevaeh, 5, who was born with a heart condition.
Nevaeh, was diagnosed with the heart condition, tetralogy of fallot, the day after she was born.
She has had three open heart surgeries, the first when she was only 2 months old. Nevaeh had her last open heart surgery three years ago.
Nevaeh also had seven heart catherizations.
Born without pulmonary arteries or a pulmonary valve, Nevaeh also had a hole between the lower and upper chambers of her heart. Surgeons told her parents it was the worst case scenario.
Since, her physician has told the Walps that Nevaeh continues to surprise him. Through the improvements she’s made, cardiologists have said she’s doing better than they had expected.
Physicians have described it to her parents as a pretty amazing case.
When Tina was asked what her thoughts were on the Ohio naming this week awareness week for heart defects, she applauded her hands.
Tina, along with Tara, talked about making a pulse oximeter test mandatory before a baby leaves a hospital to go home. They are currently involved in groups to continue efforts and help make this possible.
Amanda and Mike Wilder, of Wapakoneta, have a 9-year-old daughter, Corrin, who was born with ventricular septal defect (VSD), which means she was born with a hole in her heart.
Corrin was also born with coarctation of the aorta, and a section of her aorta was narrow and was restricting how much blood could flow through the artery.
When she was five days old, Corrin underwent her first surgery.
Amanda said physicians thought the hole in Corrin’s heart would close, but did not, so she underwent another surgery when she was 2 1/2 years old to repair the hole.
Amanda said she is grateful that Kasich is making this week an awareness week for congenital heart defects.
“I think it is amazing,” Amanda said. “It’s a long time coming.”
This awareness week will allow more people to be aware of heart defects at birth, and Amanda believes every baby should have an echo cardiogram, which is an ultrasound of the heart, before they leave the hospital.
One way the Wilder Family promotes awareness is to walk in a heart walk each year.
“This is the 7th year we’ve participated in a heart walk,” Amanda said.