Labour of love: A broken heart with no cure

Last updated 11:30 03/12/2012
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Cassi's life support system and phototherapy for jaundice.

baby Cassi
Cassi about 5 or 6 days old.

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A labour of love

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At 17 years old and facing the prospect of becoming a solo mum, nothing could prepare me for what was to come next.

At 20 weeks I was excited to find out I was having a baby girl, at 21 weeks my whole world fell apart. At the 20-week scan the sonogropher noticed some abnormalities with my baby girl's heart. 'Not to worry,' she said, 'it's probably nothing serious', but off to the specialist I went. My daughter was diagnosed with Hypoplastic Left Heart Syndrome (HLHS) in utero. HLHS means the left side of the heart did not develop so essentially my baby would be born with half a heart.

They told me it was life threateningly serious but there was a good chance they could operate and give her a chance. At 28 weeks I went into pre-term labour and while the doctors managed to halt my labour from progressing I had to spend the next nine weeks in hospital until she was big enough for surgery. At 37 weeks baby Cassi was born. I was expecting a lifeless baby, I got a pumped up screaming one. She looked normal - you would never have known she was poorly except for the odd occasion when her pain relief lapsed and her cries were filled with agony.

The test results came back and Cassi's heart was in worse condition than first thought. Her chances of surviving surgery were slim to none and there was no cure. Baby Cassi lived for nine weeks and they were the best nine weeks of my life.

Three and a half years on the advances in medicine are giving children like Cassi a better chance of a long a happy life. There are new procedures being trialled in America as we speak and my biggest hope is these will come to New Zealand to help children and their families here.

There was no cure for Cassi's broken heart. As for mine, the pieces of tape holding it together still sometimes come unstuck.

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