This baby was given one week to live

Last updated 12:48 04/02/2014
FIGHTING ON: Kaptain Te Koha Doran Kapene

Baby Kaptain's story

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This is the story of our very special boy, Kaptain Te Koha Doran Kapene.

Diagnosed with an extremely rare congenital heart condition with no cure, he has amazingly outlived his one-week life expectancy.

From my 12-week scan, doctors knew there were going to be complications. We were informed of many possibilities and told that the pregnancy might not be worth carrying on with.

But we had hope in our little bean, so we sucked up our pride and hoped for the best.

I was referred to specialists in Wellington who preformed a chorionic villus sampling - a procedure where they withdraw amniotic fluid for testing.

The results from that test ruled out the possibility of Down syndrome and we were delighted with the news we were expecting a baby boy.

Weeks went by and we went for one of our many repeat ultrasound appointments.

At 25 weeks we were informed our baby had a heart condition. He was diagnosed with pulmonary atresia with intact ventricular septum. We were told he would need many operations to fix his heart and that yet again it might not be worth carrying on. But we did, for our little boy.

Months passed and before we knew it I was being flown on an emergency life flight plane to Starship children's hospital because the baby decided he wanted to come at 38 weeks.

Kaptain was born on September 10, 2013, at 9.09am weighing in at 4 kilograms.

Hours later we were called in for a family meeting where we were told Kaptain's condition was a lot more serious than had been expected. His bottom left chamber of his heart had hardly developed and his pulmonary arteries leading to the lungs were almost non-existent.

He was then diagnosed with pulmonary artresia with intact ventricular septum, large coronary fistula, extremely hypoplastic central pulmonary arteries, bilateral ductus arteriosus, LV noncompaction cardiomyopathy with severe LV dysfunction.

They told us his condition was inoperable and there was nothing they could do.

He was sent home to Masterton under palliative care and was not expected to live more than a week. Kaptain will be 5 months old today.

It breaks my heart to know what my son goes through every day, but he still carries on as if he were a normal, healthy baby.

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We hope someone will find a cure for my boy. 

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