Prepping Siblings for a Baby with a CHD

Just like adults, children feel calmer when they understand what is going on, and know what to expect. You can help your children by explaining their new sibling's illness, and what that will mean for the family. Of course, children do not want or need all the information that adults have, so it is important to explain these concepts in a way that is appropriate for their age and developmental level.

Toddlers will have very little capacity to understand what is going on, and may mostly be concerned about separating from a parent. Older child will want and need a fuller explanation of the baby's condition and treatment.

To start, you can tell your children that their baby sibling has a heart that has formed differently from most hearts, and that doctors will need to help the baby's heart to work well. Tell them what you know about how long the baby will have to be in the hospital, how long you and/or another caregiver will have to be in the hospital, and what treatment is expected.

After giving this basic information, tell the children that they can ask anything they are wondering. Tell them that it is normal to have a lot of big feelings, and a lot of questions. Assure them that they can ask questions whenever they think of them, right away or later.

When children ask you questions, answer them simply and directly, and try not to provide more information than they are asking for. If you do not know an answer, it is OK to say, "I don't know." Assure them that a team of grownups are working together to take care of their baby sibling.

Children often have a hard time imagining what it means for a baby to be born, to have an operation, and to be in the hospital. They may not be able to understand what that could mean for the baby, or for the family. You can help by sharing resources to help them to preview the experience. Here are some ideas:

• Ask your medical team for videos, social stories, or images of the cardiac intensive care unit (CICU) and cardiac step-down unit. The Child Life team at your hospital may have resources you can use. Share these with your child, and talk through what the experience will be like.

• Watch age-appropriate videos about children or other characters visiting a hospital

• Visit the hospital in person. Eat in the cafeteria, visit the gift shop, and explore any playrooms, playgrounds, or other fun spaces. Ask Child Life for ideas about how to make this visit a positive experience.

• Ask your local heart defect advocacy group to connect you with other families with older siblings. Set up a playdate, talk with the parents, and help your children learn from others who have been in their shoes.

• Ask your medical team if they have a coping clinic with therapists who could preview the experience with your child. Or, find a therapist in the community who has expertise in medical coping, and ask them to support your child through this process.

• Read picture books about going to a hospital, having a surgery, and congenital heart disease. You can request your free copy of Daniel Tiger Visits the Hospital by emailing CNPschedulingandquestions@childrens.harvard.edu

When children have a sick sibling, they often feel complicated and challenging emotions. You can help them by planning special time with each child, both during the pregnancy and after the birth. During this time, try to:

• follow the child's lead: let them decide what you will do, and how

• praise them for what they are doing

• tell and show them how much you love spending time with them

• focus exclusively on the child, and do not allow yourself to be distracted by a device or other people

• ask them questions, and show interest

• hug, kiss, and cuddle them (if they like that), or otherwise show love in a way they enjoy

When you focus on the child and show them your interest and love, even a small amount of special time can make a big difference.

Children feel safe when life is predictable. Having a new, sick sibling is going to be a big change, and you can help them by keeping their lives as stable as possible. For example:

• try to keep a consistent routine around waking up, meals, and bedtime

• continue going to school, daycare, or whatever the normal routine is

• let the children know when a primary caregiver is not going to be available, and make sure they. know and expect the person who will take care of them

• make and display a daily and weekly schedule, with icons or pictures that the children can understand

• keep rules and expectations the same

• consider establishing new routines that you can maintain during the baby's hospitalization, such as always listening to specific music during breakfast, a nightly video call with a favorite relative, or sleeping with a special blanket or toy

Older children usually feel welcome and important when you give them a chance to be involved with their new sibling. Make sure you know the hospital's visiting policy, and prepare your children for whether, when, and how they will be able to visit the new baby.

Even if they can't visit, here are ways they can be involved, depending on their age, interest, and developmental level:

• make pictures or write notes to hang in the baby's room

• pick photos of themselves to put by the baby's bed

• choose a special toy, outfit, or blanket that can be their gift to the baby

• help set up the baby's space at home for when they are discharged

• sing or read to the baby through a video call

Parents can do a great deal to prepare siblings for the birth of a baby with a heart defect. However, experts are also available to ease the process and support the whole family.

Depending on where you live and the age and developmental level of your children, you can look for help from:

• Child Life staff at the hospital

• SibShops workshops at the hospital or in the community

• psychologists, social workers, or other therapists who work with siblings of children with illnesses

• palliative care providers at the hospital or within your community

• camps for siblings of kids with illnesses

Children are often better able to cope with a sick sibling than parents expect. Many parents are happily surprised by their children's resilience, compassion, and maturity in the face of a baby's illness. When parents listen to their children, children often will tell and show the parents what they need.

It can be helpful to remember that parents cannot and should not shield their children from every challenge. Rather, a parent's role is to guide children through life's challenges, and teach them healthy strategies for coping.

Having a baby sibling with a heart defect can be one of life's challenges. By offering love, patience, attention, and information, you can help your older children to thrive in their new family role. You may find that your children become stronger and kinder people as a result of these experiences.

This content was reviewed by a psychologist at Boston Children's Hospital.

Families local to Boston can reach out to the Cardiac Neurodevelopmental Program for emotional support by clicking below.

Families local to Boston can connect to the Child Life team by clicking below.