Psychological Impacts of Taking Care of a Child with a Heart Condition

By Xavier Mercader

Psychological Impacts of Taking Care of a Child with a Heart Condition

I’m sure anyone who’s had a child, will agree that the birth of your first, is one of the most blissful moments in life. 

As new parents, you spent time reading about how to take care of a child (as if there was an actual manual for it). You prepare your future child’s bedroom, make lists of what they’ll need, buy clothes and attend prenatal classes. All in preparation for the day that will change your life. But no matter how well you think you’re prepared, whether or not you’re a first-time parent or if it’s your fourth child, I don’t believe anyone is ever fully ready for it.

In my case, my wife and I were lucky – she had a really easy pregnancy. She felt great the entire time and was even going to the gym three days before her due date. Even the delivery felt easier than I thought it would – not that I was going to do the hard part – but men are usually more afraid than their pregnant counterparts; even if they won’t admit it.

Our daughter was taking her time, so my wife was induced. The epidural shot worked great, and my wife was even able to take a nap before showtime. After forty-five minutes of active labour, we met our daughter and I even cut the cord without fainting!

The first month felt like it went by in the wink of an eye. We were tired and obviously sleep-deprived, but we couldn’t be happier to have welcomed our daughter into our lives. 

The News

During one of our regular check-ups, the doctor told us she noticed our little one had an odd way of breathing. So, we were referred to a pediatrician. 
The pediatrician didn’t see anything odd with her breathing but told us he could hear a murmur. He said it was probably just a murmur, but suggested it might be good to go to the ER to get it checked out.

I don’t remember how many hours we spent at the ER or how many tests they ran. All I remember is hearing a doctor, at 2 AM, telling us “we are going to admit you” to the hospital. 

Our one-month-old daughter had a heart condition called Ventricular Septal Defect (VSD), that was causing her ventricular hypertrophy and as a result, was filling up her lungs with fluid.

In one day, all that happiness and bliss turned into fear, uncertainty and doubt. We felt powerless, unable to do anything but sit and wait for the doctors to tell us the plan.

How everything changedAfter a week, we were cleared from the hospital and given prescriptions to give to our daughter. Captopril to help her heart work better, and two diuretics – one to get rid of captopril once it had its effect as it has a certain level of toxicity, and the other one to reduce the fluid in her lungs.

So as new parents, that a month before didn’t even know how to change a diaper, now had to cope with administering three different medications. Giving a child that young medication is extremely challenging; we had to ensure she swallowed them, without spitting them out or choking. Most times, we were lucky if she swallowed half. We were unprepared for this. 

One morning when giving her her medication, before leaving for work, I thought she was swallowing them just fine. Until she started to turn red. She was unable to breathe for a few seconds. I turned her over and patted her back till she finally spat it all out. I’ve never been more scared in my life. The thought that I could’ve lost her, had me shaking and as a result, I was unable to go to work.

The days I did go to work were weird. Some days, it felt like everything was ok and other days, I could barely hold back tears. But most days when I came home I would find my wife crying. Typically I’m good at cheering her up, but this was different, there was nothing I could say or do to help. I worried about that a lot. I felt useless, unable to ease my wife’s pain. 

At times, being able to leave my place for a few hours, felt like a mental break from everything. But at the same time, I couldn’t stop worrying about my wife and daughter at home.

It was tense 24/7. We would put our baby to bed, try to relax, watch some tv, but we couldn’t.

Our Next Steps

In another check-up, the cardiologist told us our daughter would likely need open-heart surgery. But all we could do is wait and see how everything goes. It would all depend on how well she was gaining weight. If she started to gain weight normally, it was possible she wouldn’t need the surgery. But if she continued below the growth charts, it would mean her heart condition was keeping her from growing normally (this is what they call failure to thrive). 

So, we tried our best to get her to eat better. But how would she gain any weight if she was taking two diuretics three times a day and she wasn’t finishing her bottles?  
Every time we went to her check-ups, she was below the growth charts. And every time we were told the same thing. “It’s too early to decide, let’s see how everything goes”. This made every feeding time tense. All we could think was “I hope she eats a bit more now”.

After a few months of stress, we went from not wanting our baby to have surgery, to wanting her to have it. We didn’t actually want our baby to have to go through surgery, but we did want her heart fixed and to be able to leave the stress behind us.
With time, our little one started to gain weight. We were told she was doing well but still needed to wait to decide about the surgery. Our, now toddler, was able to play and do all the things other children do, so we started to relax slightly. We couldn’t stop worrying completely, but at last, we received some good news.

At her last check-up, we were told she won’t need surgery after all. She will be able to live a normal life. 

The Connection with Mental HealthTaking care of a child with any health condition is sure to take a toll on the mental health of their parents.

In my experience, parents feel stressed, depressed, helpless and a sense of unfairness asking themselves “why does this have to happen to OUR baby?” This feeling of unfairness, also makes us feel alone and isolated. 

I remember going to one last prenatal class to meet with the group of parents after all our babies were born, to share our experiences about giving birth. There were approximately 13 couples and most of them shared bad experiences: they had either during the final stages of pregnancy or during labour, but all of their babies were healthy. They had the ability to look back to those difficult experiences with a smile. 
When it was finally our turn, we didn’t have a bad labour experience to share, only our baby’s heart problem. And that made us feel very alone. 

What I Learned About Managing Mental Wellness  

Although everyone’s experience is different, the following are my personal tips for a parent dealing with a similar issue.

• Don’t spend time Googling your child’s illness. As hard as it might be to avoid, refrain from searching for information online. It may be misleading and will often only increase your fear and stress. Instead, ask your doctor as many questions you need until you have all the information. 
• Don’t compare your child’s health with other children. This will only contribute to the feelings of unfairness and isolation. Focus, instead, on your little one’s positive achievements (like their first words, saying “dada” or “mama”, crawling, or eating their first solid meal).
• Get Support. Having physical and emotional support is one of the most important resources when caring for a sick child. Often this will come in the form of close friends and family, but I also recommend connecting with those who are experiencing a similar situation, for example attending a support group if one exists. Or when going to your child’s check-ups, talk to other parents. All the parents in the waiting room have been through similar things to what you’re experiencing. Some will even be willing to share their child’s success story with you. This will help to alleviate some of the feelings of unfairness and isolation. And it reminds you that you’re not the only one going through this.
• Self-Care. Remember to take time to care for your mental health. As hard as it is to leave your children’s side (especially when hospitalized), go outside for a walk and take in some fresh air. Leaving the hospital room will help you reset your thoughts. Once you are back, try to get your partner to do the same, so they can put their mind at ease as well.

Conclusion

Caring for a child with a heart condition or other illness is a situation that no parent is prepared for. It can be physically and emotionally taxing to not only manage the realities of a child’s illness, like giving my young daughter medication, but also the fears associated with the illness and the unknowns that can come with that. Even though during this time you likely want to spend all of your energy taking care of your child, it’s also important to take time for your own mental health. Overall, you will be better able to take care of your child and manage the illness if you’re also taken care of.