“You can get left out a lot” — children share their experiences of having congenital heart disease

Dr Rachel Knowles and colleagues at the UCL Institute of Child Health and Great Ormond Street Hospital asked over 400 children and young people to write in their own words about the challenges of living with congenital heart disease.

Being left out is one of the worst feelings. There are all sorts of reasons that you might be left out of something. Perhaps it’s because you have a different taste in music. Or you don’t like playing the same games as your peers. But how does it feel when it’s because of your heart?

Congenital heart disease is a heart condition or defect that develops in the womb, before a baby is born. There are many different types of congenital heart disease. For example, a baby’s heart valves may not be properly formed or there may be holes between the chambers of their heart.

As part of this BHF-funded research project, children and young people aged 10–14 years from all over the UK sent in descriptions of their lives and experiences, and even drew pictures when words were not enough. They wrote about the things that happened to them in their day-to-day lives, at home, at school and with friends.

Even though children had a wide range of different heart conditions, they wrote about their experiences in very similar ways. In everything they did, young people tried to make sure that their heart condition had as little impact as possible on their lives — they wrote about how they tried very hard to be the same as their friends (or better than them!) and to take part in everything.

Friends and classmates were a really important part of their lives. Most of the day-to-day events that they described took place at school or with friends. Many wrote — or drew pictures — about trying to keep up at PE and sports.

“You cannot play sports and are weaker slower than everyone else… you can get left out a lot”.

Some experiences depended on how serious the heart condition was

All of the children and young people taking part in the study had heart surgery as a baby. While some had hearts that now worked very well after just one operation, others had complex types of congenital heart disease that could not be completely corrected.

Quite a lot of young people did not feel they had any physical limits at all since their heart operation — they could exercise as easily as their friends, they hardly ever went to hospital for check-ups and they could not remember anything about the operations that they had as a baby. They said that having a heart condition was “not a big thing” for them. Some even forgot about having a heart problem except when they went to the doctor.

But young people who had more severe heart conditions found it more difficult to keep up with classmates and accepted that there were some things that they just could not do. They found this disappointing. Good friends, as well as teachers who understood them, were a really important source of support:

“My friends help me cope through the times I feel bad.”

Around one-third of those in the study were taking heart medicines or had a complex diagnosis, like hypoplastic left heart (HLH) syndrome. This is where the main pumping chamber on the left side of the heart (the left ventricle) is very under-developed, and there are commonly problems with the heart’s valves. In babies with HLH, the blood cannot flow normally through the left side of the heart. One girl with severe congenital heart disease described how taking a medicine like warfarin to thin her blood affected everything she did:

“Warfarin changes your life because you become scared of getting bumped, hurt, cut, because you bleed a lot or get blood clots”.

Often young people with more severe heart problems did not want to just forget about their congenital heart disease because they felt it was really important to take care of their health and to let other people know how to help them — one boy wrote:

“I have to take 6 tablets in one day. I have to make sure people know about my heart problem.”

“I feel different”

Some children explained how annoying it was when something happened to make them feel different, for example not being able to have piercings or having to referee the match instead of play in it. Teachers and parents who tried to protect them — by giving them easier activities — sometimes just made them feel more left out:

“I have to help referee… whilst others have fun”.

The scar was a really big problem for a lot of children, especially in changing rooms.

“I get sick of people staring at my scar, asking questions all the time!”

But some others explained that they were proud of their scar because it showed just how hard they had fought to survive as a baby.

Very few children in the study had been bullied or teased about their congenital heart disease but some were worried that they might be in future.

Many young people were careful about telling other children about their congenital heart disease until they were sure they wanted to share the information. Teachers did not always understand and support this — one boy was annoyed about a teacher who told his whole class about his heart problem and did not allow him to choose who to tell.

So what can we learn about how teachers, doctors and parents can help?

This study showed how young people cope with their heart condition. Teachers, parents and doctors can help and encourage them to learn ways to cope.

It is especially important for teachers and parents to support children and young people with congenital heart disease to be active and live healthy lives. Helping young people to choose who to tell about their heart condition is a first step in being responsible for their own health. Young people need to learn these skills because, as they grow up, they will have to make their own choices about leading active and healthy lives.

Teachers can also make sure that children with congenital heart disease don’t feel different or left out. It is better to choose activities that everyone in the class can take part in equally than to make one or two children rest on the bench, act as referee or hold the tape at the end of the race.

Doctors take great care to test how well the heart is working during check-ups. This study has demonstrated that, in order to get a real picture of how well the heart is working, it is just as important to ask children how they are feeling outside of the usual medical checks. About how they manage at school and whether they find it easy to take part in activities with friends.

Understanding both sides of the picture is crucial in ensuring children with congenital heart disease are neither left behind, nor left out.

The findings were published in the journal PLOS ONE.

Research

Find out more about research funded by the British Heart Foundation here.