Pregnancy & Birth

The miracle baby ‘Cornflour Girl’ Ashleigh Lilley never thought she’d be able to have

"Doctors told me that 2020 would be the year that I might die," Ashleigh Lilley explains, after doctors in 2015 estimated she only had five years to live. "Now it's become the year I'll give birth!"

Looking down at her burgeoning baby bump, Ashleigh Lilley can’t help but beam.

“I just never, ever thought this would be possible,” says the mum-to-be, tears sparkling in her eyes. “Doctors told me that 2020 would be the year that I might die, and now it’s become the year I’ll give birth!”

In 2015, doctors estimated the Christchurch-born 26-year-old had just five years to live.

Along with her younger sister Megan, 23, Ashleigh is one of only four people in New Zealand to suffer from the potentially fatal, exceptionally rare condition glycogen storage disease (GSD) type 1B. The sisters’ livers are missing a crucial enzyme that makes and stores fuel from carbohydrates.

While there is a chance she may give birth pre-maturely, Ashleigh is enjoying her pregnancy and taking things one day at a time.

In 2016, the year after her bleak prognosis, Ashleigh told Woman’s Day how she and Megan had survived since infancy only due to consuming a concoction of cornflour and lemonade every five hours their entire lives – leading to her being dubbed The Cornflour Girl.

Corn starch is effective because every tablespoon contains nine grams of carbohydrates. When taken raw, it is hard for the body to digest, therefore slowly releasing energy. Missing a dose, which occasionally happened, would throw the girls into a critical condition.

Megan, who has an even more severe form of the disease, had a liver transplant in 2013. In 2018, former nursing student Ashleigh finally had one too.

But while her life expectancy improved, she was still forced to put her studies on hold due to ongoing ill health. Doctors were also very bleak about her chances of conceiving naturally.

Ashleigh first hit headlines in 2016, sharing the story of her incredibly rare illness.

“They said there was no chance I would ever carry past the first trimester,” recalls Ashleigh, who began dating her boyfriend, scaffolding yard worker Michael Wilson, 24, two years ago.

In August, after Ashleigh vomited unexpectedly and noticed her period was a few days late, her intuitive flatmate threw a pregnancy test at her and ordered her to take it.

“I screamed and cried when I saw the positive result,” tells Ashleigh, smiling at the memory. “I just couldn’t believe it, and yet at the same time I knew it was true.”

She immediately broke the news over video chat to a shocked but delighted Michael, who had reluctantly taken a job 440km away in Wellington.

“He was just as stunned as me!” laughs Ashleigh. “We never, ever thought we’d be able to have kids naturally, so we had talked a bit about surrogacy or adoption and decided that we would take the plunge in a couple of years.”

In 2018 Ashleigh, a former nursing student, had a liver transplant which has improved her life expectancy.

Megan, who currently lives with their mum, was delighted with the bombshell news, as were the sisters’ foster caregivers, who have looked after Ashleigh and Megan since childhood because of their poor health and other problems at home.

“Everyone we’ve told is super happy but completely shocked – and a bit nervous as well,” Ashleigh shares.

Since the start of her pregnancy, Ashleigh has already had a stint in hospital because her immune system continues to be low as a result of the GSD. Doctors have also said there’s a strong chance the baby will be several weeks premature.

A 4D scan of the growing baby.

But she’s in good hands. A team of eight medical and maternity experts are on standby to make sure Ashleigh and her baby are healthy.

Rather than a hindrance, the determined, upbeat mum-to-be reckons that her struggles are strong positives in raising a child.

“I used to think, ‘Why me?'” she tells. “But now I feel like my journey so far has all been leading up to this incredible miracle.”

With the first trimester over, excitement is building and a white cot is bursting with gifts.

“I was really hesitant to buy anything for a while because I was so nervous,” explains Ashleigh. “But people keep giving us stuff and I’ve finally got my head around the fact that this has a good chance of happening! Of course I’m prepared for the fact that this baby might not reach full term. I’d be naive not to acknowledge that. But whatever happens, I’m happy to be open about the journey.”

“I screamed and cried when I saw the positive result,” tells Ashleigh, smiling at the memory of when she discovered she was pregnant.

So far, the baby seems to be thriving. “He or she is measuring a bit bigger,” smiles Ashleigh, proudly showing a 4D scan of the unborn infant sucking a thumb.

“It’s hard to tell the sex at the moment,” she laughs.

“I’m leaning towards a girl, only because I love the names we’ve picked out, and Michael wants a boy so he can teach him sports, but honestly, we don’t mind at all.”

Statistically, there is a 0.3 per cent chance the baby will have GSD. “We’ll deal with it if it happens,” says Ashleigh, “but it would be devastating. I wouldn’t wish this disease on anyone.”

Ashleigh is in touch with other GSD sufferers around the world through social media, but to her knowledge, no-one with her particular strain has had a baby.

“I’m prepared for the fact that this baby might not reach full term. I’d be naive not to acknowledge that,” Ashleigh says. “But whatever happens, I’m happy to be open about the journey.”

“We’re all going into this blindfolded,” she explains.

One certainty is that because of her immune system, she’ll be in isolation for the birth. Another is that she wants to tell her organ donor’s family – whose identity is currently anonymous due to legal requirements – when the time is right.

“I can’t wait to tell them,” says Ashleigh. “It would mean so much to me to be able to thank them. They’ve given both me and my child the gift of life.”

“Two years ago, I was living on borrowed time. Now, I’ve found love with my soulmate and we’re having a baby.”

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