Couple Turns Grief Into Action, Raising Funds for Congenital Heart Disease Research

Congenital Heart Disease texas couple Couple Turns Grief into Action Stephanie and Robby McDaniel Graeme McDaniel Foundation McDaniel Family

By E.Baloyo , Parent Herald Mar 06, 12:47 am

Photo: (Photo : THOMAS SAMSON / Getty Images)

A Texas couple, Stephanie and Robby McDaniel, turned grief into action as their youngest son died from congenital heart disease when he was two years old.

In 2015, the McDaniel family lost their 2-and-a-half-year-old son, Graeme. Despite spending only a short time together, the McDaniel couple has dedicated themselves to preserving Graeme's memory and supporting other infants in similar situations.

Graeme's early diagnosis of congenital heart disease

The Texas couple had Graeme on December 18, 2012, just a week before Christmas Day. However, his arrival was met with concerns as he had multiple heart defects deemed complex by medical professionals.

The Graeme McDaniel Foundation stated that the young boy was diagnosed with a complete heart block, aortic valve hypoplasia, a straddling mitral valve, coarctation of the aorta, VSD, malpositioned great vessels, and a double outlet right ventricle.

He was taken to the Texas Medical Center, where he underwent a pulmonary artery band, a pacemaker, and a coarctation repair.

Stephanie's pregnancy was initially considered healthy until her OB-GYN discovered abnormalities in Graeme's heart rate during the 34th week of pregnancy.

Following his birth, a cardiologist explained Graeme's heart defects while sketching an image of the heart to help Stephanie understand his condition.

Sadly, Graeme passed away on a Sunday morning in 2015. Stephanie recounts spending a pleasant morning with her children, treating them to doughnuts and playing in the backyard, when Graeme suddenly stopped breathing. He passed away before the ambulance could reach the hospital.

Couple turns grief into action by funding research

Following their son's passing, according to TODAY, the McDaniels redirected their efforts toward charitable work. They believed that raising awareness of Graeme's name could generate funds to support hospitals and organizations conducting research in this field.

The couple's ultimate goal is to prevent other families from experiencing the same hardship they did with their son. The funds raised through their efforts help researchers like Dr. Damien LaPar, a specialist in congenital cardiac surgery.

Dr. LaPar revealed that his team received a generous donation of $100,000 from the McDaniels. The funds allowed them to progress their research and lab efforts in the field for the past six or seven months.

Dr. LaPar's current research endeavors focus on reversing endocardial fibroelastosis, the scarring process within the inner lining of the heart chambers. He hopes to develop stem cell therapies and treatment options by studying this condition.

Dr. LaPar is optimistic about his partnership with the McDaniels and their shared goal of promoting research to help families like theirs. His only regret is that he never had the chance to meet Graeme.

Congenital heart disease

According to the Centers for Disease Control and Prevention, congenital heart diseases refer to conditions of the heart present from birth that can impact the structure and function of the heart, altering blood flow to the body.

These conditions can range in severity from mild issues, such as a small heart hole, to severe cases where essential parts of the heart are missing or malformed.

Approximately one in four babies with a heart defect has a critical congenital heart defect, requiring surgical intervention or other procedures within the first year of life.

There is ongoing research into congenital heart disease to understand the causes better and develop new treatments.

Medical professionals and scientists are constantly working to improve the care for babies and children with congenital heart disease.

As research continues, it is hoped that more effective treatments and therapies will be developed to improve the health and well-being of children with congenital heart disease.

Through ongoing research, medical professionals are working towards a future where all children born with heart defects can receive the best possible care and support.