9 Things Parents of Kids With Congenital Heart Defects Want You to Know

Here are nine things parents of children with a congenital heart defect (CHD) want you to know, but may be too scared to say:

1. My child’s diagnosis is most likely worse than you think it is.

One of the wonderful but difficult realities of CHD is that children often don’t look as sick as they are.

Therefore, when we post pictures or you see our children in person, it can be tempting to question the severity of their condition based on the way they look. CHD is very much an internal disease that can manifest itself outward, but it doesn’t always do so.

2. CHD is lifelong.

“So is she cured now?” is a question I was asked many times after my daughter’s first open-heart surgery. This is one of the most challenging concepts to convey about CHD. Having this disease means there is something structurally wrong with the heart. There are surgeries to help “fix” these issues, but many of them are bandages to buy a child time until it’s time for a new one.

Each time a surgeon goes into a child’s heart, he is altering something in order to help the heart function as a normal heart should, but he isn’t constructing a normal heart. He can’t.

If a baby is born with an abnormal heart, that heart will never be normal. It will never be “cured.” It might be improved. It might be mended. But normal? No. Never normal. People born with CHD live with CHD their entire lives.

3. I am not overreacting.

We don’t mean to come off strong with our pro-vaccination stances and continual use of hand sanitizer, but we’re trying to prevent my child from dying. Literally. Any illness that a person with a healthy heart goes through could very well kill a child with CHD.

The health of one’s heart controls so much of the health of other organs. Children with CHD are often immunosuppressed and don’t have the respiratory reserve to handle the additional work the lungs would need to do in the case of a severe illness, the flu or even the common cold.

We wish we didn’t have to make sure everyone who comes to our home had a flu shot. We would love to be able to take our children to the park without thinking about it. We hope one day to be able to stand in an elevator without holding our breath or touching the buttons with our elbows for fear of picking up germs. But we can’t, and some of us never will.

We know that at times it seems like “a little much,” but trust us, when you have a team of cardiologists, nurses, therapists, surgeons, immunologists and other specialists who tell you one virus could put your sweet baby on a ventilator for weeks, on life support or even take her away from you forever, there is no such thing as “a little much.”

4. I want to spread awareness.

You probably see us and hear us discussing CHD often. We do this because we’re desperately trying to bring one of the most common childhood diseases to light. CHD research is “grossly underfunded” despite its frequency, according to the Children’s Heart Foundation. 

We talk about it often because we want more for our children. And the more we talk, the more people understand. The more people understand, the more funding for research. More research may mean more time with our children.

5. I want to hear about your healthy babies, too.

Is it difficult sometimes to login to social media and see all the posts about heart-healthy kids? Sure. Is it something I’ve had to actively work on? Yes, I’m human.

However, I have never met one heart parent who resents another parent for having a healthy child. We work every single day on the acceptance of our children’s diagnoses, and part of that is celebrating anything that is not medically devastating. So if your baby rolls over for the first time or says his first word, tell us. We want to enjoy that moment with you! If your kid falls off a tree and breaks his arm, tell us. We want to send a card and make you dinner!

I have had people begin telling me about a medical issue with their kids by saying, “It is nothing compared to what you’re going through.” I really appreciate it when someone acknowledges the magnitude of what our family is going through, but comparisons are something I do not make. I can’t. You’re correct in saying that three stitches from tripping on the sidewalk is not the same as a 14-hour open-heart surgery, so let’s not even compare them. What is the same is seeing your child go through something painful. Let’s just meet each other where we are at and be there for one another accordingly.

6. I am different.

Having sick children changed us. It needed to. Life has to look different in order to keep our children safe. Our days are filled with counting respiratory rates, assessing the color of our children’s skin to make sure they don’t look too blue, administering medication, cleaning syringes, calling insurance companies, therapists, doctors, scheduling appointments, working on their physical and occupational therapy exercises and at the same time trying to enjoy all the normal baby moments we are afforded.

We won’t call or text as much. We won’t always work extra hard to get a sitter for that event you want us to go to because there is a very short list of people whom we trust with our fragile children.

Also, we are tired. We are so tired. The physical and emotional exertion it takes to care for our sick babies is massive. We live every second, weighted with the thought that we may possibly lose our children. We have been softened, hardened, morphed and crushed. However …

7. I am the same.

Please don’t stop asking to see us. We know that sometimes it’s hard to know what to say to us about our kids, but you don’t always have to talk to us about our kids. The people you knew before our world changed are still here. We have a few more dents and scratches, but we are here. We still love you. We miss you. Ask. The answer won’t always be yes, but please ask. The inquiry won’t hurt us, but radio silence will.

8. I might want more children.

During my daughter’s first hospital stay (which lasted almost 40 days), there was a night when I just needed to get out of that place. I was overwhelmed and emotional, and I needed to go someplace that didn’t have constant beeping of monitors and the smell of Purell.

I ended up at a drugstore. While there, I literally stood in the deodorant aisle and began to cry. A worker came over and asked if I was OK. I told her, very briefly, what was going on in my life, and she told me her cousin had two kids with CHD and was about to have a third.

In that moment I thought, “Wow, I was supposed to come and meet this person tonight. This is so nice to have someone here who understands this burden I’m carrying.” But then she went on, “I was surprised she had her second kid. And I am really surprised she is having another one. I mean, you’d think that after one kid was born not normal, you’d just stop. But you seem really responsible, though, so I’m sure this is your last kid.” 

Ouch.

If you would have asked me how many kids I wanted before I entered the CHD world, I would have said, “Like 800.” I love being a mom. And you know what? I don’t know if we’re ever going to get pregnant again. Being a CHD parent comes with a lot of anxiety. Despite the fact that we have been told by many doctors not to worry about having this happen again with another baby (the odds are incredibly slim), my last pregnancy was terrifying, and I will always be scarred by it.

However, when and how many children we decide to have is a personal decision between my husband and myself — as it is with any couple. CHD parents will never need your commentary on whether or not they “should” have more children. Trust me. They have heavily considered anything you have to say.

9. I am so thankful for you.

We need support so badly. This is such a stressful, lonely, chaotic, devastating road we are on, and we need you. Supporting us in any way is appreciated: meals, phone calls, donations, texts, flowers, cards and, above all, prayers. There has honestly not been one act of kindness I have considered “small.”

I have received Facebook messages from people I haven’t seen in 10 years just to tell me they heard about our daughter and they are praying. This alone has driven me to tears. They say it takes a village to raise a child, and anyone who shows support for our kids becomes part of the CHD village.

We didn’t choose this life, but we are all trying to make the best of it, and we are so thankful for anyone who tries to help make that happen for our kids.

For more information, please visit the Children’s Heart Foundation website where I got all of my medical facts and statistics.

Follow this journey on heart broken : soul mended.