She and her parents, Tamworth’s Rachael and Curtis Dimmock, have had a pretty rough start to family life.

The joy and excitement of anticipating the arrival of their first child turned to grave concern just 12 weeks into their pregnancy.

An ultrasound scan revealed their unborn baby had a condition called gastroschisis – she would be born with her intestines on the outside of her body.

This revelation, as horrifying as it was, gave the young married couple comfort in some strange way. 

“By learning about it so early in the pregnancy, we were able to at least prepare for what was to come,” Rachael said.

When Alexi Louise arrived by caesarian section on February 19 at John Hunter Hospital’s Neonatal Intensive Care Unit, she was rushed to surgery for what was to become the first of many operations.

To complicate matters even further, Alexi’s fallopian tubes and ovaries were on the outside of her body, too.

The first-time parents had moved to Tamworth from the Central Coast 12 months ago to start a new life, as Curtis had started a new position with Neumann Steel and Rachael got a job at Cafe Latte.

“We’d never heard of gastroschisis before, but when we were down at John Hunter, they told us nine babies had been born with the condition in the past year,” Rachael said.

“They have no idea what causes it, but the majority of babies born with it come from rural areas.”

NICU doctors worked on the little sweetheart, putting back inside what they could, but as her stomach had been on the outside for so long, everything had swollen in the amniotic fluid.

This meant they had to put the rest in a silo bag, so the remaining contents of her intestines were slowly put back in as the swelling lessened.

Due to her condition, little Alexi couldn’t have food until all of her stomach had gone back inside, so Rachael was expressing milk every day.

Three days after surgery she got an infection in her wound and her stomach wound reopened.

Antibiotics quickly got the infection under control and they started to feed Alexi small amounts every three hours, increasing the amount gradually as she tolerated it.

After seven weeks at John Hunter, Rachael and Alexi were allowed to go home.

“I tried breastfeeding her once she was up to her full feeds, but she went backwards and lost a lot of weight,” Rachael said.

“They transferrered us back to Tamworth hospital where they continued to treat a blood clot in her leg, so we had to start injections, which we do twice a day.

“Once they saw I could do the injections, and she was on full feed again, they sent us home.”

Every day is a challenge, though, and Rachael and Curtis can never be sure of their little miracle’s good health until she’s past the six-month mark and eating solid food, which will present another set of challenges for the young parents.

“Last week we were back in hospital because Alexi got a tummy bug,” Rachael said.

“She wasn’t eating but she seems to be OK after a course of antibiotics.”

Now, at just over 10 weeks old, Rachael finally feels she’s “getting there”.

“I hate giving her needles and stuff, but we manage,” she said.

“The worst thing was being in John Hunter Hospital for seven weeks, but then there was the uncertainty of coming home to Tamworth, with no family support to fall back on, as both our parents still live on the Central Coast.

“We don’t have a really big social network, but we have a couple of good friends around, which has been great.”

There was also the worry in the back of their minds about leaving specialist care to come back to Tamworth – but Rachael said the hospital staff in Tamworth had been great.

“They say that once we get over the first few months, she will be a normal baby, and once she starts on solid food, while there may be a bit of trouble as she learns to tolerate it, she should be like any other baby,” Rachael said.

The only sign that remains of her rough start to life is a tiny scar where her belly button will be.

May is Miracle Month, and Rachael and Curtis were kind enough to share their story with readers to show they’re just one of many families struggling with premature babies, or critically-ill newborns.

If you would like to know more about the Miracle Babies Foundation visit www.miraclebabies.org.au