There are many things parents will tediously plan for after they learn they are expecting a child. From the perfect middle name to the color of the curtains in the nursery, there is no detail that is too small. However, for many families preparation for their baby takes a different turn when they learn their baby will be born with a congenital heart defect. According to the Center of Disease control, congenital heart defects (CHDs) are the most common types of birth defects affecting 40,000 births per year in the United States. Although CHD is a common birth defect among infants there are a multitude of different types of congenital heart defects and each diagnosis and child requires a specific care plan.
Like many first-time moms, Aspyn Carter went into her 20-week anatomy scan excited to see how much her baby had grown. That excitement quickly turned to despair as Carter and her husband learned their son had a congenital heart defect called Pulmonary Atresia with Intact Ventricular Septum. She described the moment she heard the news about her unborn child as breathtaking, but not in a good way. She explained, “When you’re young and expecting a child a birth defect is the last thing on your mind. A new baby is supposed to be this perfect milestone and something to celebrate but instead we were hit with big medical terms and options.” These options were not the usual kind of options new moms must consider. Instead, the family and their doctors discussed surgeries, medications, extensive monitoring of the baby, and even termination of the pregnancy. Carter said, “Nothing prepares you for a baby and absolutely nothing can prepare you for a sick baby. The thoughts of all the unknowns will swallow you.” Carter knew that despite the unknowns this was their fight and they planned to do everything in their power to support their son Haygen in his fight against CHD.
Haygen will turn 4 this year and he has had 2 open heart surgeries to help his condition. His first open heart surgery occurred when he was only 5 days old. Following that surgery, he was in the hospital an additional 23 days. On the day they finally got to take their baby home nothing was the way the Carter family had originally planned. Haygen was on 5 medications in the morning and 4 at night, they had to do daily weight checks, and keep an O2 log on a tablet that was monitored by a nurse. Haygen had his second open heart surgery at 11 months old and Carter recalled how much more difficult his age made this surgery. “Every time we came home from an open-heart surgery Haygen could not be lifted from up under his arms for 6-8 weeks. After his surgery at 5 days old it was no problem but when he was 11 months old trying not to ‘scoop’ him up just to do every day task was a nightmare.”
Carter and her husband searched up and down for answers as to why their son was born with a heart defect. She explained, “My husband and I went through some extensive genetic testing which all came back negative. The doctors told us it was just like rolling dice. The way our DNA linked up we were the ‘lucky ones.'” Carter said they are thankful that right now they are at a place of rest with Haygen’s CHD.
Carter wants others to know that this can happen to anyone – CHD does not know faces. She said, “When I first learned about this defect it hit me in such a negative way. I didn’t understand why all my friends were having healthy kids but I wasn’t. What was wrong with me or my body? I was in a dark place. But God hit me with a wakeup call. I was chosen for this. He sent this beautiful, perfect child to save me and my faith. Every day I wake up so thankful to be a part of such a miracle. No matter what is going on if you can bring yourself to find the littlest positive thing that day, you will make it. Always ask questions and never compare your story to anyone else’s. This is yours for a purpose; The God we serve is good.”
Carter said they have not done this alone; she describes the support her family has received as unending. She said, “I wish all families had even an ounce of what Haygen has. Something that truly has touched my heart is the coke tabs that people continue to bring us to donate to the Ronald McDonald House in Fort Worth in honor of #TeamHaygen.” Carter said although the Ronald McDonald House is no longer accepting the tabs they still encourage you to collect them yourself and mail a check to RMH in Fort Worth. Carter explained why this support is so necessary, “Ronald McDonald House provided us with a place to stay for 27 nights. When we had to make all these decisions for our son one decision that was taken care of was a place to rest our heads, a place to get away from the hospital and just scream or pray in silent. RMH came in like a saving grace, not once but twice. I will always do what I can to help them in anyway, because once upon a time that family that needed help was mine.”
If you wish to help make a difference in the life of another family like the Carter family you can make a monetary donation to the Ronald McDonald house, make checks payable to “RMHFW” and mail to:
Ronald McDonald House of Fort Worth
1001 8th Avenue
Fort Worth, TX 76104
If you would like to support the RMH by getting involved in some immediate house needs visit https://rmhfw.org/getinvolved/houseneeds/
For other ways to get involved visit https://rmhfw.org/