- I was born with congenital heart disease, an incurable heart condition that lasts a lifetime.
- I have two young daughters, and they have seen me recover from surgeries and take my medication.
- Technically, I’ve had heart failure for four years and wonder what I should tell them about coronary artery disease.
I always knew motherhood wouldn’t be easy. With my complex congenital heart diseaseor CHD, the pregnancy was too risky, so I built my family through adoption and welcomed home two girls, now 7 and 11 years old.
I hoped that once my family was over, my heart’s intrusion into motherhood would end. This was not the case.
CHD is not curable. It’s a chronic condition that requires regular doctor’s 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 coronary artery disease, I have had several open-heart surgeries, as well as countless small procedures over the years. I cannot separate this reality from my role as a mother. The two are not only braided together, they are tightly knotted.
There are days when I wonder how I could ever give my poor kids a mother like me, because the truth is, I’ve technically had heart failure for about four years. Although the medications and other interventions have worked so far, I may need a heart transplant one day. I am lucky to be a candidate for this life-saving operation.
I am also terrified.
I am afraid that I will have an operation that is even more complicated than the ones I have already undergone, which carries more risks and possible complications. I’m afraid to leave my daughters too young. Although I know there is no alternative, I fear 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 both made comments about my frequent naps and “Mom is always tired”. They see their relatives dropping me off at the door, so I don’t have to walk too far on a hot day. They saw me recovering from surgeries, saw me wince when I changed position.
I try to be honest. I told them I had heart disease. When they asked, I explained that my scars were from surgery when a doctor fixed my heart. But how much is too much to tell them? How much is not enough?
According Angela Mullanepsychotherapist in New York, I should let my children participate in this conversation, especially since the condition is permanent.
Assess what they know
Mullane explained that children know more than we think. They listen to their parents and, despite our caution, they listen to the conversations we have with others. “The bad news is that sometimes, without us giving them any information, they take pieces and fill in the blanks with things that are scarier or just plain wrong,” Mullane said.
It is important to assess what our children know about our health issues, correct any misconceptions, and fill in the blanks accurately.
Mullane suggested doing it organically. If something about CHD comes up on TV, for example, I can ask, “Did you know I have a condition like this character?” and let their answers guide the conversation.
Sometimes it’s better to wait for the right moment. If my daughter is upset that I can’t attend an event with her because of my condition, now may not be the best time to talk to her about it as she’s about to leave and the emotions are running high. Instead, I can comfort her and prepare her to go as best I can, tell her we’ll talk about it later, and then have the conversation with her later.
Answer questions with simple and clear information
Instead of sharing all aspects of My state with my daughters, I can just give them the name and the definition and explain to them that I was born with it. Then I can ask them if they understand or if they have any questions, which I will answer clearly. “Be as open and honest as you can with your answers,” Mullane said.
It’s also important to keep the dialogue open by giving children permission to come back and ask anything. “Because they might not know it’s okay to ask more questions,” Mullane said. “They may think it’s going to hurt you or make you sad, not realizing you’re already upset anyway.”
There is no need, however, to share details about the unknown. I don’t need to tell my daughters about the heart transplant just yet since I’m not sure it will happen. However, I can back up the information. As they get older and I have more to share, I can build on what they know. I will also be aware of how they handle my condition. Mullane suggested watching for signs of developing anxiety and seeking professional help if the anxiety begins to interfere with their daily lives.
Think about your answers to difficult questions in advance
Once this dialogue is open, children can ask excruciating questions. My daughters can ask me if I’m going to die. How does a mother answer this question?
Mullane said I should prepare and know how I want to respond ahead of time, so my response is thought out. If I know what I’m going to say ahead of time, I may be less emotional in the moment and more able to support my daughters throughout the conversation.
I can start by asking them if they are afraid of this happening. By doing this, I acknowledge their fear. I can then say something like, “That’s why I take good care of myself, take my medicine and listen to my doctors. That way I would answer the question without a yes or no, because I really don’t know, and give my daughters a sense of security without too much promise.
Unfortunately, my heart disease is not going away; my children will eventually have to take care of it. It is important to me to educate them and give them the opportunity to ask questions or to intervene to help me, so that they can at least have a certain agency on the situation. Mullane noted that while this information can be difficult to process, my daughters can develop character and empathy through our conversations.
Sharing information with them might also help me by relieving some of the guilt and fear that comes with wondering how they are handling my health issues. “Imagine if you have this open dialogue,” Mullane said, “and you’re sure their questions have been answered. Think of the relief that might bring you.” It’s hard not to worry about my kids worrying about me, but having a plan in place and knowing how I want to deal with it with them is really something of a relief.