Chapter 69 - Life Matters Sometimes the word irrepressible is not enough. Sometimes it just doesn’t convey the amount of life in a thing.

A little girl with red hair and an impish smile teaches me that. It’s her first day of school and I ask what she’s going to do when she gets there.

“Learn and listen,” she says in a voice that could stop a war.

“And do you think you can do that?”

“Yes,” she replies, with a slight lisp.

I’m talking to her mum and dad as well, but she knows it’s all about her, and when she talks into the microphone she holds it tightly in both hands, letting go with one hand only to push her younger sister away while she holds court.

“Did you ever think you’d see the day you’d be sending her off to school?” I ask her mother.

“Well, I remember back to when she was first born,” she begins, “before she even had surgery, so the very first week. And I remember looking at this tiny little five pound baby, and I had tears rolling down my cheeks, and I thought, ‘She’s never going to get to do any of the firsts: she’s never going to ride a bike, she’s never going to ride a horse, she’s never going to go to school, or learn to read and write, she’s never going to get to do any of those things you want for your child when you first see them born.’”

“How do you think she’ll go at school?”

“I think she’ll go well. I don’t know how the teachers are going to cope,” she says, through laughter.

“No seriously,” she continues, “I think she’ll go really well. She’s a really bright, vibrant little kid.”

“So why was it doubtful that she’d reach school age?”

“When my wife was twenty weeks pregnant,” says the husband, “we were told the baby wouldn’t live because she had a very serious heart condition called hypoplastic left heart syndrome – it’s where the left side of the heart doesn’t form, so she only has a right atrium and a right ventricle.

“As you can imagine we didn’t hold much hope. But we got on the internet and did a search on hypoplastic left heart syndrome, and up came the name of a surgeon in the states who was doing some experimental surgery on kids with this condition.

“So I called and his secretary put me straight through to the doctor, and he said he couldn’t promise anything but if we got over there he’d do his best.

“So we sold everything we owned and moved to America.”

He’s a bear of a man with short fair hair and a gentle face, and she’s small and dark with striking good looks and olive skin.

“I was twenty-nine weeks when we went over,” she continues the story, “and I carried her till I was thirty-six weeks when I had to have an emergency caesarean section because she had the umbilical chord wrapped around her neck, in addition to her heart problem, so she was basically dead when she was born.

“Then she had her first surgery when she was a couple of weeks old. Basically what they did was put bands around her pulmonary arteries and a stent in the patent ductus arteriosis – the hole in her heart – to keep it open.”

“What followed that one?”

“The experimental surgery was done when she was six months old – she was a little bit bigger, and stronger, and she was more able to cope – and what they did then was repair her circulation. They didn’t actually make her a new half a heart, what they did was reconstruct the way the blood actually flows around her body.”

“So how does it flow now?”

“It’s a one-way circulation, and now after her third surgery – which happened when she was almost three – she now has a Fontan circulation, which is a one-way passive blood flow around the body.”

“The way it works is the blood passes from the right atrium to the right ventricle,” the husband explains, “which pumps it through to the body via the aorta and the rest of the circulatory system, then it returns passively to the lungs through syphon and vacuum, before it’s gravity fed back to the heart to start the process over.”

Talking to this couple is almost like talking to one very well-informed person. They give each other space, and time, and add value to each other’s points when they speak. It’s the classic survivor routine, and the balance of power is just right.

“Were you ever advised to terminate?”

“Actually I was advised to terminate straight away,” she says. “When I had the ultrasound at twenty weeks, the gynaecologist took us into his room and said, ‘You’re baby’s not going to survive after it’s born, so you should terminate now.’ And he actually booked us in for a termination the next day.

“But my husband and I had already discussed, when we were planning on having children, that we’d take whatever we got and love them regardless.”

And right on cue the gaggle of girls they’ve now got erupt in a squealdom of noise. The two adults and three kids are living in a two-room converted garage on their country block while they build their family home. Because it’s been raining the kids have been raising tadpoles inside, and when a frog escapes it’s squeals all round.

“I actually had one lady approach us when we were in the street fundraising,” she continues, “and she told me I was doing the wrong thing and I should let my baby die, because it was obviously God’s will that she should die.

“And I just very kindly told her that God gave us a brain, and with that brain we should be able to make decisions, and if those decisions lead to us saving our child then that would be God’s will also.

“But that’s really rare. For the most part people are really pleased to see the beautiful, crazy little girl that’s running around today.”

“Have you had a lot of support from the public?”

“We have,” the husband says. “We’ve raised about $170,000 in donations, which really helps, because the hospital was kind enough to carry our debt, providing we don’t miss a payment, so that’s like a Godsend to us.

“And none of the donations are from millionaires. They’re from families with three kids of their own, paying off mortgages on their homes, you know? One donation that springs to mind was from Peter and Pat, that’s all it said on the bank statement: Lots of love, Peter and Pat. And they gave us $2,000. And we’ve no idea who they are. Most of the people who give don’t want recognition, they just do it because they love people, and they love life.”

“And what do you think about all this?” I ask the little girl of the moment.

“I’m excited to go to big school when I’m already five,” she says, grabbing the microphone.

“And what are you going to take for lunch?”

“Maybe my olives, and my fetta cheese.”

“Have you got any friends at school you already know?”

“Yes, Marlene, Mahalia . . .”

“That’s your big sister.”

“I know,” she says in a way that makes me realise what a dumb thing I said.

“And will she look after you?”

“We look after each other,” she says, earnestly. “She looks after me, and I look after her.”

© Monte Dwyer 2008