During your CHD care journey, you will spend a lot of time managing the physical and emotional health of your son or daughter who has a heart condition. But if you have other children, they are also affected by their sibling’s CHD. All of you will feel the stress of CHD in your own way at different times.

Many parents struggle with knowing what to say to their other children about CHD or how much to tell them. While it’s natural to want to protect your children, you also need to share information about CHD and what it means for their brother or sister’s life. Listen to their reactions and help them process the information.

When a child is diagnosed with CHD it is a major life event that impacts everyone in the family forever. Your family is a team that will work and learn together on the CHD care journey, and siblings are an essential part of the team. It’s important to include your other children at every step to help them understand what’s happening and to make sure they feel equally loved.

There are things you can do to help reduce the stress of CHD and its uncertainties on your family. Talking openly and honestly with your other children about CHD – using language they will understand – can remove some of the mystery and fear they may have about the illness. This also helps children feel more “normal” and understand that all families deal with difficulties in life.

Part of being a CHD parent is watching for the potential emotional impacts on your other children. When you know the signs, you can pay attention to changes in their personality and behavior, and learn how to deal with any problems that may develop.

CHD Siblings and Stress

No family is protected from stress. Siblings of children with CHD may feel stress for many reasons. They may feel concern about their brother or sister, be upset that they have to help care for them, or feel powerless to do anything to make it better. They may also feel like their parents treat them differently or they get extra chores because they’re not sick. A parent’s stress can have ripple effects that impact their children too. All of this stress can lead to problems with mental health.

When a CHD sibling has a problem like depression or anxiety, they usually don’t ask for help and keep their feelings to themselves. That’s why it’s so important for you to watch for the signs.

Signs of Stress in Children

A child can show signs of a mental health problem through feelings or actions that they direct internally – like depression, anxiety, self-harm, or an eating disorder. They can also show signs through feelings or actions they direct to the world outside – like anger, aggression, or behavior problems. Some siblings develop social problems such as isolating themselves from others, getting poor grades at school, or not participating in their normal activities.

You may wonder why your child wouldn’t talk with you. Children often don’t want to ask parents for the attention they need because they see your stress and know that you are already overwhelmed.

Children who develop issues like depression or anxiety, or who have parents that can’t spend much time with them, may have a lower self-esteem or sense of self-worth. This increases the risk for mental health problems, so it’s important to address any emotional issues as early as possible.

CHD Parents and Stress

A CHD diagnosis is as big and sudden of a change for parents as it is for children. Parents suddenly face the huge job of understanding their child’s heart condition and learning how to manage in a new world of medical terms and hospitals while caring for the whole family. As a result, CHD parents are more likely to have relationship stress, anxiety, and depression than parents who don’t have a child with a chronic illness.

There may be times when parents are consumed with their child’s care at the expense of nearly everything else in their lives. As you focus so much on your child, try to make time for your partnership, activities that enrich your lives, and relationships with friends and family who provide loving support. Good communication is also critical for parents on the CHD care journey.

Key Things to Talk About as a Family

This Is CHD

CHD is your family’s new “normal,” so it’s important that everyone knows what it means. Open and honest conversations help your children understand their sibling’s illness and what it means for their sibling’s future life. Get advice from your child’s physician if you need help explaining things in language that fits their age.

All Families Are Different

Children may not know that lots of families are dealing with big challenges like illnesses, financial problems, and divorce. You can help them get perspective by explaining that CHD is just a way that your family is different.

We Can Do a Lot

You will often find yourself explaining what your child with CHD cannot do. Make sure that you emphasize what they can do so that your family can focus on the positive.

Death Is Part of Life

The reality of CHD means that you need to talk with your other children about grief and loss from the beginning. Most parents find it difficult to talk about sickness and death. But if you help your children build realistic expectations early, they will be more emotionally prepared to handle the trauma and sadness of losing a sibling.

Talking Is Important

You can lead by the example of routinely talking with your kids about little and big things. When your kids know that they can talk with you about anything, they will when they are ready.

We Are Always Here for Each Other

Sometimes the most difficult conversations in a family are also the most important. The door should always be open and communication should never stop – not even when children become adults. Siblings are usually each other’s first playmates and friends, and often share the longest relationship of a lifetime.

Getting Help to Start Difficult Conversations

It can be hard for parents to talk about their child’s CHD – especially when they are stressed or struggling themselves. There are people who can help you start conversations with your other children and look for signs of how they are coping with their sibling’s illness.

  1. A pediatrician can ask questions about feelings like anxiety, guilt, or loneliness that are related to having a sibling with CHD. If there are concerns, the pediatrician can refer you to a specialist – like a developmental psychologist or therapist.
  2. Your cardiologist or a nurse at the cardiology clinic can talk with you about any concerns and give you advice on what to do next.
  3. A child life specialist can help families handle the feelings associated with surgery and hospitalization.

  • Be aware of the potential impact CHD has on siblings, and don’t assume that your other children’s mental health is unaffected.
  • Build good family relationships and a sense of connection within your family. Open family interaction and communication can help prevent behavioral problems in children.
  • An ideal environment helps children deal with their CHD or their sibling’s CHD and treatment by giving them a sense of empowerment. This comes from communicating to your children (at their level of understanding) about the CHD and what it means for the affected child.
  • Keep talking to your other children and pay attention to how they may be affected.
  • Listen to your children’s reactions, continue to discuss CHD openly, and try not to have emotional reactions or get angry at what they say.
  • Don’t try to solve family problems related to your child’s CHD condition by yourself. Be careful not to isolate yourself from your partner and others who are close to you.
  • If you have a support network reach out to them. This might be family or friends, other CHD parents, or people at your church, mosque, synagogue or other spiritual center.
  • Talk to your pediatrician or pediatric cardiologist if you have concerns about the mental health of any of your children.
  • Some heart centers suggest screening siblings of children with life threatening disease if it is impacting their daily routine. If your child with CHD is affected to this degree, it may be worthwhile to talk with their physician about getting support for their siblings from a mental health professional.
Managing the Impact of CHD on Your Family

You are doing the best you can. You are loving your child the best you can. You are being the best friend you can. It just looks different in that moment.

Katherine, CHD Parent

PARENT TIPKeep Talking With Your Partner Too

Open and honest communication with your partner is as important as conversations with your children. While nothing can remove the stress of CHD on parents, if you and your partner can keep talking to each other you can find ways to support each other through this journey.

Because partners often deal with grief and stress very differently, don’t assume that you understand each other’s feelings and emotions based on actions alone. If you are struggling to connect with your partner, consider getting relationship counseling from a mental health professional who can provide emotional support. A counselor can help you keep the discussion going and find ways to strengthen your relationship.

FAQs

When a child has CHD, their brothers or sisters can sometimes feel left out – no matter how hard you try to give equal attention to all of your kids. They may have increased anxiety and worry about their sibling if they can’t go to the hospital or if they don’t know what’s happening. Visiting the hospital can help your other kids feel like they are important too and see that their brother or sister is okay. Talking openly can also help everyone deal with the situation as a family.

Parents share their love, model good behavior, and do many other things in the hopes of raising children who feel good about themselves. A child with positive self-esteem is likely to develop positive traits such as generosity, courageousness, responsibility, and trustworthiness. Healthy self-esteem also helps a person manage the stress they experience in life and reduces the likelihood that stress will lead to mental health problems.

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