Australia Parents of premature babies running to support each other amid coronavirus pandemic

04:05  29 november  2020
04:05  29 november  2020 Source:   abc.net.au

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a teddy bear sitting on top of a bed: Baby Mahlia Walker was born at just at 24 weeks. (Supplied) © Provided by ABC Health Baby Mahlia Walker was born at just at 24 weeks. (Supplied)

Hospital coronavirus restrictions have presented yet another challenge for parents of premature babies, with just one parent at a time allowed into South Australian hospitals during the height of the pandemic.

But families have found a way to support each other and raise money for neonatal services around the nation — with a virtual marathon.

After an incredibly turbulent pregnancy, Dani Walker went into labour at 24 weeks, giving birth to her daughter Mahlia Violet, who weighed just 420 grams.

Already in her short nine months in this world, Mahlia has had seven surgeries, 40 blood transfusions and countless tests.

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"Her little body has gone through a hell of a lot," Ms Walker said.

"Day nine, she had a bowel perforation from an issue that premmies have called necrotising enterocolitis (NEC, a medical condition where a portion of the bowel dies) — she had to have surgery for that.

"She had a whole lot of other complications along the way: septicaemia, chronic lung, issues with her eyes that needed surgery."

Premature babies at risk of complications

On top of that, Mahlia became one of the five babies at the Flinders Medical Centre who tested positive to an extremely rare bacteria in June.

A handwashing basin near in the neonatal unit where Mahlia was housed for nearly 100 days was later identified as the source and removed.

Things were looking up for the Walker family when they got Mahlia home 130 days later.

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"It was really special to have both our girls together and we thought we got through the absolute worst of our journey and that we could move forward with her journey and have her thrive at home," Ms Walker said.

Mahlia was only home for four weeks when she had another complication.

"We could tell she was in pain with something … her bowel had basically turned on itself and cut off the blood supply," Ms Walker said.

"But where her small bowel joins her large bowel that had closed off, so she had to have a further laparotomy, so she lost that last bit of small bowel and her ileocecal valve, which is quite important from an absorption and feeding point of view.

"It was so tough. We had this healthy, happy, beautiful baby at home and then we had this baby who was really sick again and fighting for her life once again."

Coronavirus restrictions another challenge

Ms Walker said COVID–19 restrictions became another challenge in an already difficult time, with she and her husband unable to be in the ward at the same time.

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"When you're going through surgeries and life-threatening illnesses, it's really difficult to have to do that alone and not have the support of family around that would normally be able to be there," Ms Walker said.

"It was incredibly challenging for us as a family unit because our grandparents would have liked to spend more time with her.

"Our daughter wasn't able to spend much time with her [but] she was allowed a few exemption visits, which was amazing, and that made all the difference for her and her mental health and her bonding with her sister."

During the first wave, SA Health restrictions meant there was a limit of one person per patient in nurseries.

Those restrictions still apply at the Women's and Children's Hospital now, while the Lyell McEwin Hospital and Flinders Medical Centre are allowing two people per patient.

"Extra isolating when you're already isolated and you're already in your own lockdown — you're already not living a normal life anyway, so that makes it even more difficult," Ms Walker said.

Parents come together for support

The isolation is something mother Amy Purling knows all too well.

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She started an online community to connect families of premature babies after watching her sons Jack and James fight for their lives.

"Parents of premature babies are at higher risk of mental health problems — post-natal depression and anxiety — so throw COVID into the mix and the isolation and the anxiety around that [is very high]," Ms Purling said.

Ms Purling is one of almost 600 people around the country who have run 42 kilometres for the charity Running for Premature Babies to connect and support other families dealing with premature birth.

The run is also raising money for neonatal services around Australia.

"This marathon is really important for the community, so I think one of the big things about this run is not only is it Prematurity Awareness Month, which is November, which is really important for this community, but it's also during this lockdown here in South Australia," Ms Purling said.

'Determined something good could come from their lives'

Sophie Smith started Running for Premature Babies 14 years ago after the death of her triplet sons, who were born at just 24 weeks. Henry lived for one hour, Evan lived for 10 days and Jasper lived for 58 days.

"After they died, my late husband Ash and I were determined that something good could come from their lives and so we decided to run a half marathon to raise funds. Now 14 years later, we've raised nearly $4 million," Ms Smith said.

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She said people from every single state and territory, and even other countries, had laced up their shoes to run.

The charity has raised more than $200,000 for life-saving state-of-the-art neonatal equipment for the Alice Springs Hospital neonatal unit and the Royal Hospital for Women in Sydney.

"In Alice Springs, we're going to be providing some new humidicribs to replace the machines they're using that are more than 20 years old," she said.

"While in Sydney we're providing a humidicrib called a Babyleo humidicrib, which has been described as the next best thing to the womb and a very specialised ventilator."

In Australia every year, 26,000 babies are born prematurely, many of whom need neonatal intensive care, which is extremely expensive.

Ms Smith hopes to continue providing critical equipment for hospitals across Australia for years to come.

"I know firsthand how the best equipment is needed to give babies the best chance," she said.

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