- I was born with congenital heart disease, an incurable, lifelong heart condition.
- I have two young daughters, and they’ve seen me recover from surgeries and take my medication.
- I’ve technically been in heart failure for four years and wonder how much to tell them about CHD.
I always knew motherhood wouldn’t come easy. With my complex congenital heart disease, or CHD, pregnancy was too risky, so I built my family through adoption and welcomed home two daughters, now 7 and 11.
I hoped that after my family was complete, my heart’s intrusion into motherhood would end. It didn’t.
CHD is not curable. It’s a lifelong condition that requires regular doctors’ appointments, frequent tests like echocardiograms and stress tests, and usually medication to combat irregular heartbeats and fluid retention, among other things. Like most people with CHD, I’ve had multiple open-heart surgeries, as well as countless smaller procedures over the years. I can’t separate that reality from my role as mother. The two are not just braided together — they’re knotted tightly.
There are days when I question how I could give my poor children a mother like me, because the truth is, I’ve technically been in heart failure for about four years. While medications and other interventions have been working so far, I may need a heart transplant someday. I’m lucky that I’m a candidate for this lifesaving surgery.
I’m also terrified.
I’m terrified of having a surgery that’s even more complicated than those I’ve already had, one that comes with more risks and possible complications. I’m terrified of leaving my daughters too young. Though I know there’s no alternative, I worry that loving them as fiercely as I do and bonding with them too much will only make it harder for them to lose me.
They see my scars and the medication I take. They’ve both made comments about my frequent naps and how “mommy’s always tired.” They see their relatives drop me off by the door, so I don’t have to walk too far on a hot day. They’ve watched me recover from surgeries, seen me wince as I change positions.
I try to be honest. I’ve told them I have a heart condition. When they’ve asked, I’ve explained my scars came from surgery when a doctor fixed my heart. But how much is too much to tell them? How much is not enough?
According to Angela Mullane, a psychotherapist in New York, I should let my kids into this conversation, especially since the condition is permanent.
Assess what they know
Mullane explained that children know more than we think. They’re in tune with their parents and, despite our carefulness, they overhear the conversations we have with others. “The bad news is that sometimes without us giving them information, they take bits and pieces and fill in the blanks with things that are scarier or just untrue,” Mullane said.
It’s important to assess what our kids know about our health issues, correct any misconceptions, and fill in the blanks with accuracy.
Mullane suggested doing this organically. If something about CHD comes up on television, for example, I can ask, “Did you know I have a condition like that character?” and let their responses guide the conversation.
Sometimes, it’s better to wait for the right time. If my daughter is disappointed that I can’t attend an event with her because of my condition, it might not be the best moment to talk to her about it when she’s about to leave and emotions are high. Instead, I can comfort her and prepare her to go herself as best as I can, tell her we’ll talk about it later, and then have the conversation with her at a later time.
Answer questions with simple, clear information
Instead of sharing every aspect of my condition with my daughters, I can simply give them the name and definition and explain that I was born with it. Then I can ask if they understand or have questions, which I’ll answer clearly. “Be as open and honest as possible with your answers,” Mullane said.
It’s also important to leave the dialogue open by giving kids permission to come back and ask anything. “Because they might not know that it’s OK to ask more questions,” Mullane said. “They may think it’ll hurt your feelings or make you sad, not realizing you’re already upset anyway.”
It’s unnecessary, though, to share details about the unknown. I don’t need to tell my daughters about the heart transplant yet since I’m not sure it will happen. I can, however, scaffold the information. As they get older and I have more to share, I can build on what they know. I will also be mindful of how they’re handling my condition. Mullane suggested keeping an eye out for signs of developing anxiety and seeking professional help if anxiety starts to interfere with their everyday lives.
Think about your answers to tough questions ahead of time
Once that dialogue is open, children may pose excruciating questions. My daughters may ask if I’m going to die. How does a mother answer that question?
Mullane said I should prepare and know how I want to answer in advance, so that my response is thoughtful. If I know what I’m going to say beforehand, I may be less emotional in the moment and more able to support my daughters throughout the conversation.
I can start by asking if they’re afraid that will happen. By doing this, I acknowledge their fear. I can then say something like, “This is why I take good care of myself, take my medicine, and listen to my doctors.” In this way, I’d answer the question without a yes or no, since I really don’t know, and give my daughters a sense of security without overpromising.
Unfortunately, my heart disease isn’t going away; my children will have to deal with it eventually. It’s important to me to educate them and give them the opportunity to ask questions or step up to help me, so they at least have some agency over the situation. Mullane noted that though this information may be tough to deal with, my girls may develop character and empathy through our conversations.
Sharing information with them could also help me by relieving some of the guilt and fear that come with wondering how they’re handling my health issues. “Imagine if you have this open dialogue,” Mullane said, “and you feel confident their questions have been answered. Think about the relief that could bring you.” It’s hard to not worry about my kids’ worrying about me, but having a plan in place and knowing how I want to address it with them really does feel something like relief.