As a CHD parent you have a tough job. You need to learn many new skills so you can be your child’s medical caregiver at home, and you have to manage the business side of an illness – which includes all the effort and money it takes to get your child the best care you can.

Even though you want your child to have the freedom to play and do all of the things that kids without a heart condition can do, you know there are real limits that you must enforce to keep them safe.

CHD parents must try to find the right balance between being smart and being overprotective of their vulnerable child. In time, you will get to a point where most days feel “normal” and you are not constantly focused on your child’s heart.

At the beginning, learning to care for your child at home can be a struggle: you wonder if you’re doing everything right, and worry that every little change in your child is a potential health problem. Have confidence that you will grow into the world’s expert when it comes to your child’s health – but it will take time.

You have a lot of control over how your family will go through life with this illness. You also have an important role in shaping how your child feels about their CHD. Your attitude and outlook can make a real difference. With love, encouragement, patience, and positivity, your family can thrive even in difficult times.

Common Things CHD Parents Worry About

  • 1. Vulnerability to illness

    Some children with CHD do have health problems related to their heart condition that make them more vulnerable. For example, a common cold is not a big deal for most children, but it may be a concern for some children with CHD. Your child’s physician will tell you if there are vulnerabilities that you need to watch for.

  • 2. Physical activity

    Your child’s heart condition may limit their ability to do some physical activities. Young children are generally very good at slowing down their activity when they feel tired. Any change in their activity level will usually be a slow change. As a CHD parent, your role is to observe your child, encourage them to be as active as they can, and let your cardiologist know if you see a change.

    When children become teens, they may react to peer pressure and push themselves beyond their own comfort level and their physician’s guidance. For example, some teenagers with CHD are told not to participate in varsity level sports when they are in high school. As your child grows, continue to talk with your child’s physician about what activities are safe. It will help you and your child feel more confident with their level of activity.

  • 3. School

    It is common for parents to be concerned about their child’s performance in school. Classmates may see a child with CHD as different – maybe because of a scar, or a learning challenge, or the need to be less active. Most children with CHD thrive in school, but some may struggle. It can be especially hard on a child if they feel different at a time when they wish to be “the same.” Watch your child for signs that they are having trouble at school or in life, and be sure to discuss these with your child’s physician.

  • 4. Major cardiac events

    You will always be watching for changes in your child’s heart. But some parents may also worry that their child will have a sudden catastrophic event like a heart attack or stroke, because these are events commonly connected to heart disease. If this is concerning you, talk about it with your child’s cardiologist. These catastrophic events are not the usual concern in children as they grow with CHD. It is far more likely for children with CHD to develop slow and subtle changes in their health over time.

The Struggle to Find “Normal”

When you’re a CHD parent, it can be hard to juggle trying to keep a “normal” life going for your family and constantly needing to make decisions about what is safe for your child. Every heart condition requires different levels of precaution, and it may take time to ease into the right balance between living and keeping your child away from people or activities that put them at risk.

Many CHD parents focus on giving their child the freedom to live the life they want. If you overly restrict your child’s activities or don’t let them play, they may resent you. Help your child explore activities and sports that their physician says are safe for them to do. Also help your other children lead as normal lives as possible so they don’t resent missing out on things because they have to protect their sibling’s health.

Tips for Navigating Your Child’s Feelings About Their CHD

  • 1. Realize that what you say matters

    The way you talk about CHD can have a major influence on the way your child feels about their illness – especially when they are younger. Early on it’s especially important for your child’s mental health to treat their CHD as their “normal.” Children are experts at picking up on our unspoken messages: if you are constantly talking about their heart problem, they can hear a negative message. But if you talk about their heart simply as something special that needs care and attention, the message can be simpler and easier for your child to understand.

  • 2. Help your child focus on the positive

    If you notice that your child is worried about their heart, provide reassurance and focus on the positive. You can also explore the possible negative signals they may be picking up on from anyone in their environment. If there’s a problem, explain the situation to people your child interacts with and share things they can do or say to support your child’s emotional health.

  • 3. Respect that your child’s feelings may change over time

    As kids get older, they may say that they hate CHD. Your instinct may be to correct them, but it’s also important to listen with an open heart. Don’t try to fix your child’s feelings. Your attention and respect for their point of view validates their feelings. When they are ready for input, search for a balance between helping them focus on what they can do and listening to what your child is saying. If they are talking about what they can’t do, and you always reply by talking about what they can do, your child will not feel heard.

Talking About CHD With Other Kids and Parents

Encourage your child to be honest and matter of fact with their friends. If other kids ask about their CHD or their surgery scar, answering their questions – rather than trying to hide it – can make things easier.

As your child approaches school age, you may wonder how their CHD will affect their friendships or the way they interact with other kids. Many CHD parents write a “Lifesavers Letter” to share with classmates and their parents that explains the heart condition and how they can help your child stay healthy – including communicating any known health risks with you. Talk with their teacher or another CHD parent if you want help thinking through how to handle situations at school.

As your child gets older, be sure to take their lead about how much information they want to share.

Celebrating the Wins

Talking about CHD doesn’t have to be all doom and gloom. Far too often, we don’t celebrate the great job parents, siblings, and others are doing dealing with such a tough situation.

Celebrating your child’s successes – and the contributions of each family member – helps everyone feel valued. Positive reinforcement is just as important as being honest about CHD risks. It can give families the reassurance, strength, and courage they need to keep moving forward and embrace the hope of achieving the best quality of life possible for the whole family.

Focus on all of the things your child and family CAN do instead of what they can’t. It’s easy to look at what everyone in the family lost, but find the things you have gained or that you still can do instead. (Read more)

Jodi Smith, CHD Parent and Mended Little Hearts, National Program Director

Coping With the Stress of Parenting a Vulnerable Child

Having a child with a chronic health problem like CHD makes the entire family vulnerable to stress, and everyone adjusts in different ways to the demands and stress of a childhood illness. The way you react and cope with this stress may change with your child’s age and health, and each parent may cope differently.

CHD parents have a wide variety of feelings about their child’s illness, and that’s ok. Some parents approach the illness very practically and handle the challenges with ease. Other parents may often struggle. Some parents cope on their own while others lean on a support network for their emotional needs. During periods of increased stress – like a hospitalization – your need for support may be greater.

Some parents strive for normalcy, others become experts in their child’s condition and focus on facts and data, and others become hypervigilant. You may find yourself using all of these strategies or a combination of strategies along your CHD care journey.

How CHD Makes Your Child Vulnerable

Learning to Parent Heart Healthy and CHD Kids Together

There are very real practical and emotional challenges of raising heart healthy kids alongside your CHD child. For example, you might let a heart healthy baby cry and soothe themselves but worry that your CHD baby might turn blue if you let it cry and fuss.

It’s common for parents to feel guilty about all the focus a CHD child receives in comparison to their siblings. This can be compounded if you struggle with feelings that you should have an equal amount of worry for all of your kids. Sometimes your kids may even reflect this back to you by telling you that you give more love to their sibling with CHD.

You may not always have the energy to give as much attention to other children, and there may be times when siblings resent each other because they feel there’s preferential treatment. This can lead you to feel more guilt or shame as a parent.

Doing your best as a CHD parent is a day-by-day job. Some parents try to hide worries for their CHD child and talk about it after the kids go to bed. Parents can also make time with their other children to do something special together – maybe even an activity that their CHD sibling cannot do. Try different strategies to find a balance and learn what works for you and your family.

Parenting a Vulnerable Child

We want him to experience life like a normal kid, but we also have to take some precaution.

Rachel, CHD Parent

PARENT TIPBuilding Confidence to Care for Your Vulnerable Child

Whether you recognize it or not, you will start to build confidence in your ability to care for your child on the first day you get home from the hospital. You will gradually learn more and need less advice from the care team as your child recovers from surgery and you get more practice with your daily care jobs like giving medications. In most cases, your child will require less medical attention over the years and you will settle into a comfortable routine at home.

There may be times – and some may be a surprise – when you need to reach out to CHD parent friends or others who have supported you before. Your child may suddenly have a hard day at school, or you may unexpectedly feel strong anxiety or deep sadness. Keep in touch with your support network so that someone is always there to help. Be proud of the fact that you have learned how to take care of your child, your family, and yourself.

FAQs

Support systems are very important, and you will likely call on many different people at different stages of your CHD care journey. Almost all parents need a combination of emotional support, practical guidance, or informational help along the way.

Parents can find support in a wide circle of people. This may include your partner/spouse, family, friends, people in the community, or people at your church, mosque, synagogue, or other spiritual center.

Some CHD parents find it difficult to talk about CHD with people who do not have the same experiences of caring for a sick child. If you want to speak with someone who can relate to your experiences, there are many ways to connect with other CHD parents.

The important thing is not to isolate yourself. Try talking with different people, learn what works for you, and do what you’re comfortable with.

It’s hard not to be afraid when you have a vulnerable child. CHD parents may wonder “Did I miss something?” or “What if we get bad news at the next clinic visit or the next procedure doesn’t go as planned?” This kind of fear and anxiety can last for some time and impact different parts of life. If you’re having these or other kinds of overwhelming feelings, it’s important to get emotional support.

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