Emily Nichols – How To Cope As CHD Parent
Emily Nichols’s son, Dylan, was born with a heart defect. She now works for the American Heart Association and writes in honor of CHD Week, February 7-14.
“Your son has a very serious congenital heart defect and will need surgery very soon.” Those are not words you want to hear when your baby is just five hours old. But, that’s what happened to us and led us down a path in our lives we never knew we would be on.
Our son, Dylan, was born on March 11th, 2008. The pregnancy was healthy, every checkup was routine and easy, every ultrasound was a fun chance to peak at our baby boy. We couldn’t wait to meet our first child. We ended up being induced a day before his due date due to low amniotic fluid and Dylan was born at 2:38am via c-section as his oxygen levels were dropping while I was in labor. He was tiny at just 5 lbs. 11oz. but everything seemed perfectly fine. We settled into our room, sent the grandparents off and from there…well, the rest is a blur.
When Dylan was five hours old, the nurses took him to the nursery for a bit so I could rest and they came back very soon after that to very calmly say that they heard a murmur and he was looking a tad blue so they were going to take him to run some tests. We weren’t overly worried (yet). That was until a cardiologist came back to our room and said Dylan was down in the NICU receiving a lifesaving medication while we wait to go to Riley Children’s Hospital where their team would tell us what was next. He then pulled up the American Heart Association website, and showed us a diagram of a heart diagnosed with Tetralogy of Fallot with pulmonary atresia.
We were transported to our hospital when Dylan was three days old, then he had surgery to place a BT shunt in his heart when he was five days old. (Well, Dylan was transported via an ambulance and we followed in our car with our empty car seat—me bawling my eyes out and fear in my husband’s eyes.) The doctors and nurses took such good care of Dylan (and us) and 10 days later, we brought our baby boy home. Dylan did very well at home, but as he grew his oxygen levels decreased and he began looking more and more blue. At eight months old, he had open heart surgery. I remember feeling scared and mad—I was mad that my baby had to go through this and I was scared well, because my baby boy was having open heart surgery. Once again, everyone took sure great care of all of us and 1 week later we went home!
Now, here we are 8 years later. Dylan is doing very well! However, when he has his yearly cardio checkup, I always get that anxious feeling I felt every day leading up to his surgery those first eight months of his life. Dylan has had a couple of heart caths and other basic procedures here and there, but everything for him has always been routine. However, each time I always hold my breath when his cardiologist starts discussing how everything is looking and what his future holds (more surgeries). There is no cure for congenital heart defects—only lifelong monitoring and treatment via medications and/or surgeries.
That’s when my anxiety level really goes up—when I start thinking of his future. Dylan is currently on no medications and has no physical limitations but that could all change. I worry about him going off to college, and I worry about him as an adult and his future children. You could say all parents will worry about their children, but if you have a child with a congenital heart defect—that worry is certainly heightened!
You feel so helpless as a parent when your child is sick so we relied greatly in our faith and in our doctors as we started our journey with Dylan (and still do!) We didn’t realize 1 in 110 babies are born with congenital heart defects until our baby was one of the ones. What happened after we started sharing his story was pretty amazing. Many people started reaching out to us to let us know they knew an adult living with a CHD, or so and so’s baby was born with a CHD too, then they would connect us to these families. We didn’t feel so alone anyone in our journey. We weren’t the only ones.
I started my own research into local support groups and came across Mended Little Hearts. It’s a support group for parents who have children born with CHDs. However, there wasn’t a chapter close to me in Indianapolis. So, I reached out to MLH and found out there was another CHD mom locally who was inquiring about starting a local chapter as well. So, in 2008 we started our local chapter of Mended Little Hearts and now the group has grown to over 300 members who are sharing their experiences as their children are growing and encouraging new CHD families as they start down their paths. There are even some adults with CHDs in our group who have been very willing to share their experiences. There is so much hope in being able to talk to someone who has been in similar shoes like you.
In talking with other heart moms, I discovered we all seem to have some form of anxiety—mine is in regards to Dylan’s future, some moms have separation anxiety when they are away from their CHD baby, and anxiety and worry over their children getting something as simple as a cold (which can turn into something much more for some CHD kiddos). Others have expressed their other children were affected by their sibling’s CHD as well.
At the same time we were launching MLH, our family started volunteering for the American Heart Association. Like I already mentioned, we felt so helpless in what we could do for Dylan. So, instead of letting worry takeover, we decided to take action. We raised donations for the Heart Walk, and I began going to speak to corporate teams about Dylan. As Dylan became older, he started coming with me and simply saying thank you to volunteers and donors. At 8 years old, he is now a seasoned public speaker and has a love for bringing awareness to CHDs!
For the past six years, I have been blessed to be a Youth Market Director for the American Heart Association. I get to share Dylan’s story almost daily and motivate young children to take care of their hearts. The American Heart Association started the Support Network a couple years ago as a resource for heart patients and their families. This is an invaluable tool for parents! To be able to connect with other CHD families and share your experiences can help ease your anxiety (speaking from experience).
If you’re feeling helpless, I would encourage you to find a support group and to also take action—volunteer for an organization that will directly impact your child. Also, don’t forget to take care of yourself! If you’re not healthy, it will be even more difficult to take care of your heart baby. We didn’t expect to be on this road, but I’m grateful to the other families we’ve met along the way who have made it a bit easier.