- Accepting your feelings
- Talking about your feelings
- Telling your family and friends
- Building your support team
- Dealing with stress
- Understanding the cardiovascular system
- Understanding congenital heart disease
- Understanding congestive heart failure
- Understanding cyanosis
- Understanding medications
- Finding trustworthy online resources
- Chest X-ray
- CT scan
- Electrocardiogram (ECG or EKG)
- Heart catheterization
- Magnetic resonance imaging (MRI)
- Oxygen saturation test
- Transesophageal echocardiogram (TEE)
- A Preparation Guide for Calling with Concerns about Your Child’s Health
- My Child’s Important Medical Information
- My Child’s Medications List
The doctor has told you your child has CHD. At first, your shock and intense feelings may be hard to handle and overwhelming at times. However, as you face your emotions and talk about them, you will begin to find ways of coping with this unexpected event. You will be amazed at your strength and the resources that are available to help you through this time.
This chapter gives you information and tips on coping with the diagnosis of CHD in your child, like accepting and talking about your feelings, telling family and friends the news, building your support team, and dealing with stress.
Accepting Your Feelings
The birth of a baby is usually a time of celebration, excitement, joy, uncertainty, and wonder. When you are told your child’s heart has a problem, you can struggle to balance your feelings of worry and disappointment with the celebration for your child’s arrival.
All parents struggle because the baby they have dreamed about is different from the healthy baby they expected. You feel like you are grieving the loss of that healthy child. This grief is often the same feeling experienced when a loved one dies. You are not alone in what you are feeling, whether it is fear, shock, guilt, anger, sorrow, or confusion.
When parents find out their baby has a CHD, many are afraid their baby will die. They describe feeling “terrified,” “frightened,” and “scared.” Some parents say they feel physically sick, while others say they feel like running away or escaping.
Most parents are shocked when they learn of their child’s diagnosis. Many give reasons why this cannot be happening to them. Some parents are also shocked because they have already had healthy children and expected another healthy baby. Some parents are surprised their baby has a CHD because “there is no family history of heart problems.”
At first, parents have difficulty believing that their baby has a CHD. As the news starts to sink in, they often ask, “What caused it?” or “Why is this happening to my baby?”
Parents sometimes wonder if they are at fault. One mother believed her smoking and drinking over Christmas was the cause of her baby’s CHD. These suspicions are often untrue, and the feelings of blame, self-doubt, and guilt are not easy to discuss.
Some parents feel angry. Their anger may be with things like their faith or with health care professionals who they feel have influence over their child’s health. Some may be angry that an ultrasound done during pregnancy did not find the heart defect.
Like most parents, you were probably hoping for a “perfect” baby. Now that you know about your baby’s CHD, the way you think about your baby may change. Instead of planning the perfect future, you may spend a lot of time thinking about your child’s medical and care needs.
Parents often grieve as their thoughts of their child change. Grief is normal. But you can still celebrate your baby’s arrival. Take time to also cherish how wonderful and special your child is.
Parents often say they feel confused, lost, helpless, worried, “unravelled,” or “upside down.” These feelings can make it hard to get on with daily life. You may wonder what to do with your feelings or even ask yourself if your feelings are normal.
Talking about your feelings
As you talk about your feelings, you will probably reach a better understanding of how you are behaving. Getting your feelings out in the open reduces the tension and adds to your sense of hope and anticipation.
You and your partner will likely have different feelings at different times and cope with these feelings in your own unique way. Sharing your thoughts and emotions helps both of you understand and respect what the other is feeling. Many parents are surprised by what they learn about each other during this unexpected event.
Some parents find it hard to talk about their fears, although they are thinking about them all the time. It can take a lot of effort to express your feelings. Some ways to help with stress are creative activities, like journal writing, art, music, gardening, or other hobbies; a healthy lifestyle with physical activity; a nutritious diet; and relaxation activities.
Telling your family and friends
Remember that you are not alone. At first, you may not want to share your feelings yet also do want the closeness that sharing brings. Some people know just how to listen and comfort, but not all friends and family are supportive in times of need.
A number of changes happen as you begin to share your news with others. You may feel
- supported by your family and friends as they listen and offer comfort,
- frustrated because your well-meaning friends and family members tell you not to worry and do not seem to
- understand what you are going through,
- anxious about the questions people ask that you do not have answers for or have not even thought to ask,
- alone as some of your family or friends seem to withdraw from you and your family,
- sadness and grief, because sharing with others can make your baby’s CHD feel more real to you,
- relief that others now know your news.
It can help to think about how each family member or friend is likely to respond to what you tell them. You can always tell people later, but you can never “un-tell” your story.
Take your time. This is your choice.
When you do decide to tell others, remember that your friends, family, and work colleagues want to help. Some may not know how to help. Tell your support team exactly what is helpful and what is not. For example, try saying
- “Just listening to me is helpful. It’s hard when people tell me not to worry.”
- “It’s okay to ask me how I’m doing.”
- “How about taking the kids this weekend so Alex and I can have some time alone?”
- “I can’t seem to make meals and do housework lately. Any help would be wonderful.”
- “Come with me to my child’s next appointment.”
- “I need some time off to deal with all of this.”
Most libraries have pamphlets that also help explain how friends can make life easier for you.
Building your support team
There may be others you have not thought of yet who could offer good support for you and your family. There may be advantages in letting others know about your needs. For example, you can find helpful programs and support through the hospital’s cultural and spiritual advisors, in your community, and on the internet.
Cultural and spiritual support
The health care team wants to support you and your spiritual and cultural beliefs while your child is in the hospital. Tell them what you need. Most hospitals also have a chaplain, social worker, and/or an Indigenous patient navigator available to help.
If you have spiritual beliefs about the use of blood products, please discuss your concerns with your health care team.
The Chaplain’s role
Whatever your beliefs may be, chaplains are often available to help
- explain your cultural and spiritual beliefs to the staff,
- find community resources to support your needs,
- support you in ethical dilemmas or decision-making,
- explore your spirituality and spiritual resources.
The Social Worker’s role
Meeting with the social worker is an opportunity for families to discuss concerns about their child, as well as personal and family stress. Medical and mental health conditions can impact a whole family’s functioning. The social worker can help
- clarify issues,
- work through difficult decisions,
- plan solutions,
- facilitate family support groups,
- find community resources,
- give information on financial resources,
- advocate for your family.
The Indigenous Patient Navigator’s role
The Indigenous patient navigator service is often the first point of contact for many self-identifying Indigenous patients and their families. The Indigenous patient navigator can
- give emotional support,
- advocate for your family,
- attend patient, family, or medical care team meetings,
- offer ceremonial and cultural supplies and supports and elder services.
Community and support groups
Health care professionals in your community, such as public health nurses, your family doctor, community social workers, and family counsellors, can help you during this difficult time. Mental health services, such as the BC Women’s Hospital’s Reproductive Mental Health Program, can also provide important help.
Local community organizations, like service clubs, faith-based organizations, and community centres, can offer financial aid and other forms of help. For those parents with workplace benefits, explore your medical benefits for opportunities to build your support team, like weekly nursing services to provide respite or monthly counselling services to process your feelings.
Look for support from those who have shared similar life experiences. Talk about your concerns. The Children’s Heart Network (CHN) is one of the key providers of support and resources for heart families in BC. CHN offers information, tools, stories, and programs for youth and families living with CHD, like
- parent-to-parent support, so you can talk to trained resource parents who have been there and will listen and offer advice and information;
- coffee groups in communities throughout the province, so parents can meet and feel understood by others in the same situation;
- social events for children of all ages throughout the year, so children and families can connect with and support each other;
- two youth camps during the year, so children and youth can have fun together;
- Heart Matters, CHN’s newsletter, so you can access news and resources on the latest information about congenital and acquired heart disease;
- education for families, so they can learn about CHD together.
In addition to CHN, ask your health care team about other services or trustworthy resources that may be available in your area, including
- other family support groups/resources, such as Starlight Children’s Foundation Canada and Make-A-Wish Foundation of Canada;
- Knowing But Not Knowing: Finding Out about Your Baby’s Heart Problem before Your Baby Is Born, a booklet available from BC Children’s Hospital;
- community resources, such as infant development programs, child development centres, supported childcare programs, and community mental health programs;
- social media resources.
The internet can be used as a virtual support network. Some parents have found chatting online with other parents to be very helpful. Use caution when comparing experiences; remember everyone’s experience is unique.
However, again, you need to be careful: sharing your story online can be a source of relief, but it can also open you up to criticism and bad advice. If you get opinions that are upsetting, then it is time to withdraw and talk to the people who form your day-to-day community—the ones who can provide support in a more meaningful way.
If you are making difficult ethical decisions, the internet is not the place to seek advice. People giving advice online cannot support you day-to-day or help you live with your decisions. Talk to someone who can.
Questions for building your support team
You are in charge of building your support team.
- What do we need to help us cope right now?
- Who can best support us?
- Is this person stressing us or supporting us
Dealing with stress
No matter what kind of family you have—large or small, two-parent, single-parent, foster-parent, or step-parent—your family will be affected by your child’s CHD. There will be many emotional ups and downs. New events can be stressful for the family, like your child’s diagnosis, major tests, surgery, a stay in the intensive care unit, coming home from the hospital, starting school, and moving from pediatric to adult care.
Sometimes it will seem like everything happens at once. There may be a new baby in the family, a job change, or a move to a new place, while at the same time you are dealing with your child’s health. These stresses add up and make coping with day-to-day living a challenge.
Much of your family’s energy will be used in supporting your child, dealing with doctors, going to the hospital, and keeping the household going. When your focus is on your heart child, your other relationships can suffer over time. Conflicts may arise.
The information in this section may help keep your relationships safe from the effects of stress. In this section, you will find strategies for dealing with your partner, your other children, and your family and friends.
In times of stress, family members expect support from each other, and some may believe a crisis will draw them closer together. However, it is possible for relationships to become strained.
Different people have different ways of coping, and this can be a huge stress on the relationship. You might expect that your partner will feel and act the same way you do, but people deal with problems in very individual ways. There is no “right” way to feel during difficult times. Partners need to cope in their own ways.
Each partner expresses themselves in unique ways, which can strain the relationship. How each person copes with stress can also play a part. For example, some partners try to cope with their pain by working a lot; others find it impossible to do even the smallest task.
Relationship tips during a crisis
Even though you may feel drained of energy, it is a good idea to spend time with your partner. Remember that during a health crisis you and your partner may have limited emotional energy. Try to use this time to support each other and strengthen your relationship. Let’s look at tips for supporting your relationship during a crisis:
|Privacy||Give your partner some privacy and distance when needed, but also come together and find ways that you can share your pain. Silence may cut you off from your partner’s support. However, you or your partner may sometimes feel like silence is the only way to cope. |
Find private time to spend with your partner. Spend some time talking about your feelings and your child, but make sure you also spend time together doing and talking about other things. Some people make the mistake of giving all their time to their sick child. You and your partner need each other, and your child needs you both.
Make time for yourselves without feeling guilty about it.
|Patience||Avoid making decisions about relationships during times of stress. It is often tempting to use a crisis as a test for the relationship: “If it doesn’t work now, what good is it anyway?” But this is not a good time to think this way. Give your relationship some time.|
|Respect||Respect each other’s ways of coping. Some people become completely consumed by a situation, while others do not allow themselves to feel the pain. A person who hides emotions may feel overwhelmed by their partner’s emotional storm or see the partner as weak and unsupportive. A person who needs to deal openly with emotions may see a partner who is “getting on with life” as cold and unfeeling. |
Remember: there is no right or wrong way of coping with stress. Try to recognize and be accepting of your partner’s way of coping even though it is different from your own. A crisis is not a good time to try to change your partner’s personality or your relationship.
|Boundaries||Try not to take your partner’s anger or criticism personally. It is natural to take out your frustrations on a person you think will forgive you. Remember that the anger and negative feelings created by the situation may be directed at you but not meant for you. |
When you are upset by the anger and need to respond, it is usually less hurtful expressing how you feel rather than accusing. For example, “I feel really hurt when . . .”
|Sex||Some partners may lose interest in sex because they feel tired and depressed all the time. Others may need more intimacy than usual and the release sex can offer. |
If you talk about your sexual needs, there is less chance that one of you will feel rejected or resentful.
|Support from others||Consider joining a support group where you can talk with other couples about your experiences. |
If you cannot reduce the stress in your relationship, consider counselling from a professional. Your social worker may be able to give you a list of counsellors.
|Roles||Share responsibility for talking to health professionals and supporting your child. |
Often one parent becomes the caregiver of the sick child while the other works. This can create difficulties for both. The person who is working gets information second-hand and may feel left out or uninformed. The caregiver may feel the partner does not understand what it is like at the hospital.
If possible, try to make meetings with the health care team when you can both be there. If this is not possible, think about ways both of you can be part of discussions. For example, arranging discussions on telephone extensions or by conference call.
Your other children
You have barely enough time and emotional energy to care for your child with CHD. You may wonder how you will give all of your children the support they need. Many parents later feel guilt and regret, believing that their relationships with their other children suffered during times of increased stress and anxiety.
It might help to know that most siblings recover, and some may even benefit. For example, some children become more independent and mature, and some learn to empathize (understand what others are feeling) more.
There are steps you can take to ease the stress on your other children. Let’s look at a few suggestions from health professionals, parents, and siblings.
Tell siblings what is happening in a way they can understand
You may be worried that you will frighten your other children by sharing too much information.
However, even very young children are likely to sense family anxiety, and it can be disturbing when they do not understand the problem. They may imagine things that are more frightening than the reality, or they may blame themselves for upsetting the family.
A simple version of the truth that is suitable to their age is best.
- Ask them questions. Find out what they’d like to know and what worries them.
- Create an open atmosphere so your children know they can ask you about anything and express all their feelings, including anger and jealousy.
- Use words and examples that they can understand.
- Remember that you may have to repeat information several times.
- Give more detailed information when your children get older.
Here are some examples of what to say to your healthy children:
- “A congenital heart defect is a serious problem. It will not just go away like a cold. A congenital heart defect, also called CHD, needs treatment. It may take a long time before _______ gets better.”
- “Most children with heart defects can be helped. The doctors, nurses, and we, as a family, will work hard to make _______ well again.”
- “Nothing any of us did, thought, or said caused _______’s CHD. No one knows why or how people get CHDs, but we do know CHDs are not contagious. You can’t catch one from being with _______.”
- “When someone we love is very sick, it makes us all feel bad. People feel bad in lots of ways. Some people feel sad, some feel angry, and some feel afraid. You can’t help how you feel, but sometimes it helps to talk about the feelings.”
- “_______ needs us more than usual while sick. That is why things at home are different than usual. We need to be kind to each other and remember that we all love each other just the same, even though sometimes it seems things aren’t fair.”
- “It’s all right for you to enjoy things and have fun even though _________ is sick. If you’d like to help, you could [make a card for ______’s wall, make a playlist of favourite songs, etc.] or help the family at home by [folding the laundry, setting the table, etc.].”
Be aware of your other children’s feelings
Remember that children need to get support rather than give it. Let your other children know how you are feeling but do not ask them to help you make decisions. Let them know that you are able to cope with the situation most of the time, even though you seem upset.
For example, if your teenager finds you crying or you get upset at them, it can be harmful to say, “I feel so scared and lonely. I don’t know what to do. I don’t know what I would do without you.” Instead, you might say, “This is really scary for all of us. I’m feeling pretty down today. I have some bad days, but I know we can all get through this together. How are you feeling?”
Your children cannot provide the kind of support you will need to get through a stressful situation. However, children often need to be helpful, so give them opportunities to be part of the family team. For example, say, “I’m feeling sad today. It would help me if you played a game with your little brother while I make dinner.”
Give your children the opportunity to express their emotions, even negative ones
Like you, your other children have been thrown into emotional turmoil and will probably have many conflicting emotions: concern for you and for their sibling, jealousy over the attention their sibling is getting, fear and uncertainty, abandonment, sadness, anger, and guilt. It is normal for your healthy children to have negative feelings and to change the way they behave.
Jealousy, anger, and resentment are normal feelings in siblings, even in siblings of healthy children. Expect some negative behaviour, and do your best to give them the chance to voice negative feelings (anger, jealousy) without scolding them. Let them know it is all right to feel that way sometimes, but hitting others is not okay.
Your child may need help expressing sad feelings as well; many siblings feel they need to be strong for their family. Be honest about your own emotions and let them know you can be sad together.
Young children will have a hard time expressing their feelings in words. Help them find other ways. For example, ask your child to draw a picture of the family, their sibling, etc., and then ask your child to tell you about the picture. Watch for clues to their emotions and ask questions.
Another way to help your children is to offer them children’s books or videos available from the Family Support and Resource Centre at BC Children’s Hospital.
Tell your children they are not at fault
Young children sometimes have unreal ideas about why things happen or what caused a problem. This magical thinking can happen with children and adults.
Some children may blame themselves for what is happening. For example, a sibling may feel that because they didn’t want a sister, they caused her heart defect. From time to time, tell your children that what happened was not their fault.
Have special time with your other children
Many siblings say they resent all of the attention that goes to the child who is sick. They feel better when their parents set aside time just for them.
Some parents say that setting aside this time can be difficult, particularly if one child is hospitalized. For those times, find another adult who can make the child at home feel special and offer support by listening and talking. This can be a good way to involve grandparents or close friends who want to help.
Include siblings in the experience if they wish
A serious illness affects everyone in the family, and everyone needs the chance to be involved and feel useful. Siblings will find long hospital visits tiring but might like shorter visits.
Plan visits carefully and talk to them about what they will see.
If your other children don’t want to visit the hospital, consider taking photos of their sibling. Photos can help siblings feel like they are still in touch with each other, and give your other children an idea of where you go and what the hospital ward looks like.
You can also make siblings feel like they are the “expert” in certain areas, such as choosing toys to bring to the hospital, drawing pictures for their sibling or the nurses, or making playlists for their sibling in the hospital.
Give opportunities for siblings to meet other children in the same situation
Many parents seek out other parents to talk to and share with but forget to provide the same thing for their children. Talking to other siblings who understand and share their experience may be very helpful. Just knowing that there are others out there—that they are not alone—can be reassuring.
Let teachers know that siblings might be experiencing stress
Your children’s concerns may affect their work at school. Ask their teachers to watch for problems and provide extra support if needed.
Family and friends
Sometimes the most difficult thing to do is admit that you need help and ask others to carry some of the load. Here are some tips on asking your family members and friends for help.
Tell family and friends what you need
Most people want to help, but not everyone knows how. They may not know what to say or what to offer. Their fear of saying or doing the wrong thing may cause them to avoid you. You may need to take the lead and show others how you want to be treated. You are more likely to get what you need if you give people some direct hints.
For example, do you want to talk about your child openly and honestly? Or would you prefer to use time with your friends to take your mind off your troubles? You might say, “I really don’t want to talk about my child’s health right now. I’d rather you help me take my mind off of it.” or “I can’t think about anything else. If we’re going to talk, I have to talk about how my child is doing.”
Practise saying it to yourself first
At first, it might be hard to find the right words for what you need. It can help to write yourself a script, either in your head or on paper. Practise it until you feel comfortable saying it aloud, and then use it when you need to tell someone your needs.
Find other ways than saying it in person
Sometimes you may find it too hard to talk to people, even those closest to you. A voice message lets you screen calls and handle them when you want to. Record a simple message such as, “Thank you for your concern. I often can’t answer the phone because I’m caring for_________. Your call means a lot, so please leave a message, and I’ll call you as soon as I can.”
You can also call one or two people, and then ask them to call other family members and friends to keep them updated. This helps you avoid explaining a painful situation over and over again.
Some families choose to use social media or personal blogs to share their story.
Share your emotions
Sharing emotions, both the highs and the lows, helps most people cope with the stress of their child’s health problems.
If your partner is not able to share and you do not have a close family member or friend, look for someone else with whom you can work through your emotions. Some possible support people are a social worker, chaplain, Indigenous patient navigator, counsellor, hospital volunteer, mental health services worker, or parent support group.
Your child’s grandparents, your siblings, or close relatives are the obvious people to call on for support. Before asking them for support, consider whether they will be able to give you the support you need without adding stress. During a health crisis, you and your children’s needs are the priority.
Your parents can be wonderful support people, but they may also find the situation especially hard. Not only are they concerned for their grandchild, but they may also feel helpless about your problem. You may find yourself comforting them rather than being comforted.
Limit how much you share until you are sure how much support they will be able to provide.
Others who want to help
Some people want to provide comfort, but they end up irritating you or draining your energy.
You don’t need to completely leave them out if you want to avoid hurting their feelings. You might give them a role to play outside of the hospital. For example, ask them for help with shopping, laundry, driving, or making phone calls.