Military families are constantly facing all types of hardships- deployments, financial struggles, adjusting to new areas, numerous moves- the list goes can go on forever. However, one thing that no military family expects to deal with on top of all the other ever-changing variables of this lifestyle is their child having a heart defect. In the United States alone, over 25,000 babies are born each year with Congenital Heart Disease (CHD) and baby Noah is one of them.
When looking at this sweet-faced little boy, you would never know that he was born having a problem with his heart. In looking at his parents, you would never know that this military family struggled with the news, while getting ready to PCS across the country. Justin and Christina learned of Noah’s heart defect during their anatomy scan when Christina was 19 weeks pregnant. After the ultrasound was complete, they were pulled back into a room to speak with a doctor. Knowing that this was not routine, Christina began to worry. “I remember sitting there trying to listen, to listen to every word the doctor said, and the tears just started falling, as he’s showing me this tiny heart, beating away.”
Justin and Christina had no substantial knowledge of CHD but were sent to a specialist at a local children’s hospital to learn more. There they found out that Noah’s condition is called Tetralogy of the Fallot, which causes low oxygen levels in the blood. He had a large hole between the right and left ventricles as well as an overriding aorta, which caused his oxygen-rich blood to be pushed out of the right ventricle instead of the left one. As scary as this news was to them, they learned that it was not genetic; it was simply the way Noah’s heart formed.
Christina was monitored very closely throughout her pregnancy. When they PCS’d she went to a specialty care hospital to get the best care possible for herself and Noah. Even before they had become pregnant with Noah, they had switched Christina’s insurance to Tricare Standard so that she could choose her own doctor- and this was a decision they were happy they made when it came to her pregnancy and Noah’s immediate care because they felt they were receiving the best care possible. Christina was induced at 41 weeks, but she didn’t get to hold her first born until about 2 hours later, after some testing and an echocardiogram were performed on her son. Since his birth, Noah has had one surgery and periodic testing done to track his progression. Currently, Noah is a happy, healthy seven month old, he just “has a scar to show his journey.” In the future, he will have to have the valve in his heart replaced but otherwise he is expected to have a normal and healthy life.
Both Justin and Christina admit this has been a tough journey, but they want other parents who are just learning about CHD to know that “it’s going to make you love your child in a way other parents will never understand. Don’t, for one minute, think you are alone in this. Write down questions because you will have plenty of them. Take time for you- to feel upset, then embrace it, and be proactive about it. Building a support system will help you deal with the hard days.”
They recognize that Google will be the first place you want to go to get answers, but they also warn that the information out there can be overwhelming especially given that each CHD patient’s condition is very unique.
All in all, Justin and Christina feel that, if anything, Noah’s condition has been a blessing in disguise. The greatest thing they have learned from their experience with Noah through all of this is that, “We aren’t guaranteed…anything in this life. We make a decision to want to have a child and you never know how many days, weeks, months or years you or your child will have on this Earth. It’s what you do with that time that matters. Noah is more perfect than any baby I have dreamt of having. Not every day will be perfect but…love that child with everything you have. If you do that, you’ve conquered everything you can do as a parent.”
For more information about CHD, Justin and Christina recommend the following resources:
- The American Heart Association– they recommend you check out this site once you know a little more about your child’s specific defect.
- Little Hearts, Inc.- this website is to share your story and/or connect with other parents of children with CHD.