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ROLE MODEL

A full life with half a heart

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Suzie Hutchinson helped set up the family support charity she now runs for children with only half a working heart

Hypoplastic left heart syndrome (HLHS) is an incurable heart condition where a child is born with an underdeveloped left ventricle and the right has to pump blood to both the lungs and the body.

In 1994, Ms Hutchinson worked as a nurse specialist at Birmingham Children’s Hospital, which performed the first successful surgery to treat the syndrome. While this could not repair the heart, it increased life expectancy. Many families travelled to Birmingham for the surgery.

One of Ms Hutchinson’s roles was talking families through diagnosis and possible treatment options. Seeing parents’ need for support, Ms Hutchinson helped set up Little Hearts Matter, a charity that works to connect families of those diagnosed with HLHS and other single-ventricle heart conditions, and provide support for one another.

“Families support new young families learning how to cope with a new diagnosis, children and young adults offer peer-to-peer support

Suzie Hutchinson helped to set up Little Hearts Matter showing young people that many things are possible,” Ms Hutchinson says. “Friendships have developed and a new family of support has evolved.”

Those friendships and family support systems have kept Ms Hutchinson at Little Hearts Matter for 20 years. She became a full-time employee in 1999 and chief executive in 2003.

“Every day, families show me more of what it’s like to live every day with the worry and fear that mums, dads and children have to cope with,” Ms Hutchinson says.

“Knowing that your child has only half a heart and may not make it through the next year, having to fight for every support that your child needs to get the most from their life is very tough. It is a privilege to be able to travel part of their journey with them.”

Part of Ms Hutchinson’s role is work to improve treatment and care and support the changing needs of the children who have grown up under the care of Little Hearts Matter.

“It is very easy to look at them from a medical perspective but it is equally important to turn it slightly on its head and go ‘That might not be the best way for families to deal with that’,” she says. “ We have to remember that parents are part of the medical care team of that child – we have to involve them.”

As the treatment options progressed and became more successful, the journeys of the young people she works with have become longer, which has brought about new challenges.

“When I first started looking after these children we were looking for them to survive their first surgery,” she says. “Now we are looking at them to survive into adulthood. I have had to learn a lot about education and social care because every aspect of these children’s lives are impacted. We are learning on the job. They keep us on our toes.”

Although more children are living longer, many still do not make it to adulthood because of the stress put on the heart. But, “working with these

children, you would never know the stress they are under”, Ms Hutchinson says.

“When I first met young children with only half a working heart, I expected them to be weak, quiet and lacking in hope,” she says. “How wrong could I be? Even though young people with this complex diagnosis know that they only have one heart pump they strive to use it positively.”

For Ms Hutchinson, the growth and insight of the families has given her more knowledge than anything else.

“They invite me into the most stressful times,” Ms Hutchinson says. “They teach me something new about a perspective they have that I may not have seen. To talk to them about their aspirations, they are tenacious and determined. It makes you determined to help them get there.”

 

Little Hearts Matter is celebrating its 20th anniversary this year. For more details on the charity, visit www.lhm.org.uk

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