Families connected by rare heart condition

Heart Children clients (from left) Debbie Riley with son Brady (7 months), Angela Evans and Lucas (11 months), Sarah Walker and Zachary (5 months), all of Dunedin; Moana McDonald and Sahara McCabe (2 months), of Oamaru, and Theresa Wallis and Ashleigh Mab
Heart Children clients (from left) Debbie Riley with son Brady (7 months), Angela Evans and Lucas (11 months), Sarah Walker and Zachary (5 months), all of Dunedin; Moana McDonald and Sahara McCabe (2 months), of Oamaru, and Theresa Wallis and Ashleigh Mabbett (3 months), of Dunedin. The children all have the rare congenital heart condition hypoplastic left heart. Photo by Craig Baxter.
They are not yet 1, but already they have had seven open-heart operations among them and have six more to go.

Indeed, when the mothers of these five babies from Dunedin and Oamaru first met in Dunedin yesterday, their chatter was peppered with words such as atria, patent ductus, bidirectional Glenn and hypoplastic.

The babies all had the rare heart condition hypoplastic left heart, and the references were part of the language families such as theirs had to learn, Dunedin mother Sarah Walker said.

Her 5-month-old son, Zachary, has already had two of three life-saving open-heart operations.

‘‘Often, you get people who say, ‘Oh, I know someone who had a hole in their heart.' Well, this is so many times worse and only we, who share the same experience, really understand each other.''

Under the condition, the left side of the heart including the aorta, aortic valve, left ventricle and mitral valve, has not developed properly, and is tiny and unable to pump oxygenated blood around the body.

Saving the young patient's life requires three life-threatening operations - one in the first week of life, one at 3-6 months, and one at the age of 3.

Doctors had told Mrs Walker not to expect her son to live past the age of 40, but she hoped advances in technology would extend his life expectancy.

Only five to 10 babies are born with the condition each year in New Zealand.

Heart Children regional family support co-ordinator Bronwyn Finnerty said it was pure chance that five of the New Zealand babies born with hypoplastic left heart in the past 12 months lived in Otago.

‘‘But it does provide a chance to develop a good support network.''

At their meeting at Cumberland College, in Dunedin, yesterday the mothers, who all gave birth at Starship hospital in Auckland, relayed similar stories of the heartbreak of having to watch their children spend their first four weeks in intensive care before they could hold them.

Theresa Wallis, the mother of 3-month-old Ashleigh Mabbett, said not only was there emotional stress, but also pressures on everything from finances to the other children in a family.

Ashleigh was her third child and she was ‘‘getting through'' with support from her family, but the situation was ‘‘tough''.

‘‘Next month, we have to relocate the whole family to Auckland for a month. You can't leave a toddler behind for that long, and you can't get much financial support for that.''

Advice from a close friend who had a child with a different heart condition was helping her.

Angela Evans, mother to 11-month-old Lucas, agreed that having other families to talk to and support group Heart Children New Zealand to provide advice and assistance, was invaluable.

- This year's Heart Children Awareness Week runs from May 25 to 31.

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