GASTONIA, N.C. -- Open heart surgery is a scary thing to face at any age, but imagine having to go through the operation during the very first weeks of your life. Not once, but twice.
Courtney Christmas reached out to NBC Charlotte to share her daughter Haley's story in light of American Heart Month (February) and Congenital Heart Disease (CHD) Awareness Week which runs February 7-14.
Haley's troubles began just after she came into the world in Denton, Texas.
"We found out after birth. Our nurse took her that night to give her a bath and noticed she looked a bit blue," said Christmas.
Haley then failed an oxygen test, and Courtney was given even more bad news the next morning.
Doctors diagnosed Haley with a congenital heart disease (CHD) called total anomalous pulmonary venous return. TAPVR is a rare congenital malformation in which all four pulmonary veins do not connect normally to the left atrium.
"I thought I knew what fear was, but I didn't really know until I heard the words, 'There is something wrong with your baby's heart.' All of the unknown was beyond any emotion I had ever felt," Courtney said.
Nearly 40,000 infants in the U.S. are born each year with congenital heart defects, and CHDs are the most common cause of infant death due to birth defects, according to mendedhearts.org.
You may remember late night host Jimmy Kimmel went through a similar ordeal with his son, Billy, who was born with a heart defect in April 2017.
Haley underwent two open heart surgeries before she was even two-weeks-old. The family was at the hospital for two months and five days.
After the family moved to Gastonia when she was around three-months-old, Haley had to have another procedure done at Levine Children's Hospital. The little fighter is now 15-months-old.
"At this point, she is considered corrected, but there is a possibility of needing other open heart surgeries again. Scar tissue could build up in her veins. Surgery is not a cure unfortunately," Courtney explained.
Courtney, a Clover High School graduate, hopes Haley's story will raise awareness in the Charlotte area about CHDs. She is a part of a few support groups on Facebook that have helped her deal with Haley's condition.
"There is so much love and kindness in those groups, and they have really helped me through some difficult times," said Christmas.
The Children's Heart Foundation said CHD research is drastically under funded in both the public and private sectors relative to the number of lives the disease affects. Click here to learn how you can help.
Symptoms of severe congenital heart defects that may show up after birth include:
- Rapid breathing
- Cyanosis (bluish coloring of the tongue, lips, skin and/or fingernail beds)
- Fatigue (more than normal)
- Poor feeding
- Poor weight gain
Patients face a life-long risk of health problems such as issues with growth and eating, developmental delays, difficulty with exercise, heart rhythm problems, heart failure, sudden cardiac arrest or stroke.
If you have concerns, ask your pediatrician, especially if you have a family history of CHDs.
