It is often a juggling act trying to meet the needs of all the children in your family, and LHM receives queries about how to meet the needs of brothers and sisters of a child with a single ventricle heart condition, both at times of particular stress such as surgery, and on an ongoing basis. We plan to improve our support for siblings over time, and in the meantime we hope this article will give an overview of some thoughts and ideas to help families.

Key points in time

Diagnosis

An antenatal diagnosis brings a series of questions for a family who already have children, particularly around what to tell their other children and how to include them in the preparations for the baby’s birth. It will be important to have a full understanding of the possibilities for your baby yourself before trying to work out a plan for your other children.

 “Telling our daughters Amelie (3 years) and Libby (22 months) that the baby in my tummy had a poorly heart, would need an operation and might not live to come home is right up there amongst the very worst things I’ve ever had to do. I wasn’t sure how much they would understand but I told them the truth and I have continued to do that ever since. They understood more than I thought too. After Lara’s first stage surgery, Amelie said “See mummy, you thought she wouldn’t be brave but she was”.”

Bringing the baby home

Babies with single ventricle heart conditions are likely to be very fragile when they first come home from hospital, and will also need lots of care and attention – even more than a heart-healthy baby.

One mum suggests including siblings in your baby’s care:

  • Always include siblings right from the start. Give them little jobs to do like pass the babywipes, read a story to the baby or help Mummy push the pushchair.
  • Don’t shut them out from what you are doing with the baby / child even if this is something quite unpleasant like passing an NG tube or the baby being sick. A child’s imagined fears are often much more frightening than the reality. Remember they also have huge concern for their sibling!
  • Sellotape an NG tube to their doll or teddy to normalise it!

Preparation for hospital

The same principles of preparation should be explored for all your children in relation to preparing for a future hospital admission – they all need to understand (at an age-appropriate level) what is likely to happen. Include them in the preparations such as by asking them to do a packing list, or suggest they do a scrapbook of their activities while you are away. Read books about hospital together, or look for video footage for older children.

Encouraging siblings to visit their brother or sister in hospital will help them gain an accurate understanding of procedures. Let them know beforehand what to expect (for example, tell them how their brother or sister will look, what equipment they might see, people they might meet, sounds they might hear, etc.). The sick child may feel comforted by the presence of the sibling, and parents get to spend time with both (or more) children.

 “Of course they will be anxious about their sister when she goes into hospital but at least they are in possession of the facts, they trust us as parents to give them the real situation and they are as prepared as anyone ever can be.”

Feelings

It is important to remember that, just as in any family, many situations that arise around sibling relationships are part of normal everyday sibling concerns.

However, having a sibling with a heart condition may also impact upon brothers and sisters in other unexpected ways and will therefore be different to those experienced by families who do not have a child with a congenital heart condition.

Fear

Many children worry that one or both parents may also get sick. This may make them feel vulnerable, and afraid. Depending on their age, some siblings worry that their brother or sister may get sicker or may die. Many fears can be quieted by accurate and age appropriate explanations from parents or medical staff.

Jealousy

Despite feeling concern for the ill brother or sister, almost all siblings also feel jealous. Siblings may feel particularly jealous or excluded when presents and cards flood in for the sick child, Mum and Dad stay at the hospital with the sick child, and most conversations revolve around the sick child.

Even when they are at home or at school, when the siblings go out to play, the neighbours may ask about the sick child and at school teachers express concern about the sick child.

Sadness

Some children show their sadness by crying often; others withdraw and become depressed. They may confide in relatives or friends that they think their parents don’t love them any more.

Anger

Siblings’ lives are bound to be disrupted by their brother or sister’s diagnosis and this can make them feel very angry. They may ask questions such as “Why did this happen to us?” or “Why can’t things be the way they used to be?” or “Why can’t we do things together?” On these occasions siblings’ anger may be directed at their sick brother, their parents, relatives, friends, or doctor.

Guilt

Beyond feeling guilt for causing the disability, most siblings feel shame for their normal emotional responses to the condition like anger and jealousy. They may need reassurance that, as with other health-related problems, sometimes heart conditions just happen, and no one in the family caused it. Help your child understand that just because people think something or say something, it doesn’t make it happen. Some children even feel guilt for being healthy. They think, “Why should I feel great when he’s so frail and sick?”

Bereavement

Breaking the news of a child’s death to their sibling(s) is probably one of the hardest things parents may ever have to face. Whatever words you choose and no matter what the child’s age, it is important to give them physical comfort – cuddle them whilst breaking the news, hold their hand, whatever feels right to do. Use words that are appropriate to your family and the child’s age. Tell the truth, be factual and do not give information that could possibly be disturbing in the future, for example don’t explain death as sleep, as sleep is a normal function and this could frighten children into not wanting to go to bed.

Please see our book ‘From us to you: Bereaved families share their journey through grief’, which includes a section entitled ‘Other children’.

The future

Many brothers and sisters of children with a congenital heart condition will be in the lives of family members with special needs longer than anyone and some may well be there after parents are gone.

Throughout their lives, brothers and sisters will share many of the concerns that parents of children with special needs experience, including isolation, a need for information, guilt, concerns about the future, and care-giving demands. Siblings will continue to face issues that are uniquely theirs including resentment, peer issues, embarrassment, and pressure to achieve.

Both children with disabilities and their siblings need a realistic perspective in which they view their parents as people who are able to cope with problems in spite of difficulties they may face. This will provide siblings with a role model to refer to as they develop, rather than a superhero they could never live up to!

 “Sometimes I worry that by sharing so much information and encouraging such responsibility, Amelie and Libby, now age 9 and 7, carry too much concern and anxiety on their little shoulders. However, when I see the sensitive way they relate to their peers and the instinctive care they show towards Lara and other younger children, I can’t help thinking that it is not such a bad thing after all. They have a wonderful understanding of and compassion for people with disabilities and if Lara having half a heart means that Amelie and Libby have grown a heart and a half that’s probably okay.”

Books

Here are a few ideas of books which siblings may find helpful to read:

  • The Huge Bag of Worries, Virginia Ironside
  • Sometimes, Rebecca Elliott
  • When Molly Was In The Hospital: A Book for Brothers and Sisters of Hospitalized Children, Debbie Duncan
  • We’ll Paint the Octopus Red, Stephanie Stuve-Bodeen and Pam DeVito
  • The Sibling Slam Book, Donald J Meyer (for teenagers)
  • Water Bugs and Dragonflies: Explaining Death to Young Children, Doris Stickney

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