Every week counts: When should babies be given a chance to survive?

WHEN Shannon went into labour, she was told there was nothing that could be done for her baby. He was a week too early to try and save. WARNING: Confronting

WARNING: Confronting

“I WAS told there was nothing that could be done to save my baby, all I could do was hold him when he arrived.”

NSW mum Shannan Human was living a nightmare. After a rollercoaster of a pregnancy, she went into labour with her son Leo at just 23 weeks.

“Because doctors didn’t actively encourage resuscitation of babies born earlier than 24 weeks, he was in the ‘grey zone’ — had I been a couple of days further along, they would have done more to save him,” she told news.com.au.

It’s an awful term, but in Australia babies are largely considered “unviable” before 24 weeks. On the fringes of “unviability”, every week, every day, every hour in utero counts, and each baby has to be treated on a case-by-case basis.

Parents are counselled through risks, the prospect of disability, handicap — or at the very least, survival — and a gut-wrenching decision is made.

Lucky, little Leo managed to hold on, and arrived kicking and screaming at 27 weeks, weighing 1.056kg.

“I swear I counted every minute until he was ‘viable’ and I still absolutely hate that word,” says Ms Human.

Leo Human managed to hold on, and was born at 27 weeks.

“As I was lying in the theatre, one of the doctors was whispering in my ear things like ‘OK, baby may not breathe when it arrives, it will need to be resuscitated, it will need to be taken away, babies at this gestation have 80 per cent chance of survival but may be blind, deaf, have cerebral palsy or a range of other issues.’

“I asked the doctor to please stop, this was the day my baby was being born and I was determined that it would be a day to celebrate.”

Now a healthy five-year-old, Leo is thriving.

“He easily met all of his developmental milestones and is such a friendly, intelligent, cheeky and outgoing boy.

“He has an amazing smile, he loves science, ancient Egypt and generally being the centre of attention,” she says.

Leo is now a healthy five-year-old.

“Physically he is perfect but he does have sensory and behavioural issues, which isn’t uncommon for babies born prematurely, and keeping on top of all of this is a handful with weekly therapies and early intervention programs.”

SURVIVAL NOT SO BLACK AND WHITE

Australian hospitals with sufficient neonatal facilities and expertise can help a baby survive from any gestation, although parents are warned of a future filled with possible disability and handicap if a child is born under 24 weeks, should they survive at all.

This is despite a growing body of international research that shows that more than two-thirds of babies born at 22 or 23 weeks can survive when given active medical care. Long-term health is another issue, but they can survive.

Melbourne-based obstetrician Charlotte Elder said parents, doctors and midwives, decide whether active care is something they will pursue or not, daunted by possible damage to critical lung and brain function.

“There is a lot of counselling about what the changes of success for that baby is, and whether it’s worth the baby going through that stress or not,” Dr Elder said.

“Do we have a clear line where we say we can actively care for those babies on those edges of viability, where it could go either way? No, not really.

“You can’t have a date where babies on this date are OK and these dates are not — the reality is every case is so different, and that’s how they have to be treated.

“If you look at it over time, we have more and more earlier gestational babies surviving.

“But we don’t just want them to survive, we want babies to be in the best possible condition they can be in — the ability to participate in school life, avoid things like long term lung disease, long term visual outcomes — keeping babies alive, and keeping them alive to have a good, healthy life go hand-in-hand.”

Fellow obstetrician Bernadette White said Aussie hospitals were rated on a level system, with Level Three facilities including a Neonatal Intensive Care Unit able to take a baby no matter how premature, while second level hospitals able to help a baby born from 32 weeks and a level one hospital, likely in a remote area, capable of care from 35 weeks on.

“At 24 weeks the outlook is not good and a significant number of those babies won’t make it through the first few days, and those that do will have a significant handicap,” Dr White, the clinical director at Mercy Health Hospital told news.com.au

“At 24 weeks only half will make it, and of those that do, half will have a significant disability like blindness or cerebral palsy, but each week further along you get, the better a baby’s outlook, and from 28 weeks we are generally optimistic about the outcome.

“These are very difficult situations and they would be handled differently and with the greatest of care.

“If women say they want everything done, they will do it.

“If they say it’s going to be too hard then we still provide care and warmth for the baby but they wouldn’t put in a ventilator if they knew it was going to be futile.

“It’s very difficult circumstances, difficult decisions — you couldn’t have a blanket rule — it really is a case-by-case basis and we want parents to know we did everything we could for their baby.”

WEIGHING LESS THAN 500G

When Paris Panetta was born, at 28 weeks, weighing just 410 grams, she was the second smallest baby to be born (and survive) in Australia — and fifth in the world.

Paris was a tiny 410 grams when she was born at 28 weeks.

Today, Paris is a happy, healthy 13-year-old schoolgirl. Sydney mum Anna Panetta recalls the long journey to wellness for her second child — one that once fit in the palm of her hand.

“I wasn’t allowed to touch her at first, but I couldn’t resist it,” Ms Panetta told news.com.au

“I don’t know whether it was protocol or for prevention for her to catch an infection, but I was told her chances of survival were slim and instead of counting days, I had to count hours.

“I would clean my hands with the sanitary liquid provided and much to the nurses’ disgrace, I would touch her forehead.

“My belief was that she needed to feel my touch, to know I was there, so when the nurses came in I quickly took my hands out of the humidicrib.

“I watched her translucent skin gain colour, I watched her eyes slowly open — her first poo was one of the biggest achievements for Paris and we all celebrated!”

For the duration of Paris’ stay in hospital she was on oxygen, and on a few occasions, the tiny baby would stop breathing and doctors had to work hard to save her life.

“Etched in my mind is how quickly the colour of death rises from your newborn’s feet up towards their body. It was horrific,” Ms Panetta said.

“Days went by and Paris grew stronger and my mum would say to be, ‘watch out Anna, this one’s a fighter! She’s not going anywhere’.

“My mum was right.”

Paris is now 13 and by all reports, has been an ‘absolute joy’ to raise.

“Her big smile and heart makes up for her small stature,” she said.

Paris at four years old.

“She’s accepted her growth restriction in terms of size and accepted the challenges that come with it.

“Paris has always been an active, sporty child with soccer being her favourite sport, then touch football, tennis and netball.

“She is in her second year at Monte Sant’ Angelo and loves it so much — she loves her new friends, the independence of catching the bus and learning new things.

“There is always hope.”

STILL IN HOSPITAL

When she was 20 weeks pregnant with her third child, Sydney’s Josie Dadd was diagnosed with serious complication Vasa Previa — where a baby’s blood vessels cross the opening of the uterus and are at risk of rupture — and Placenta Previa, when the placenta covers the opening of the cervix.

Ms Dadd was hospitalised at 26 weeks and three weeks later on March 28, 2017, gave birth to daughter Maddalena. At 29 weeks gestation, she weighed just 1.252kg.

Josie Dadd and her tiny daughter Maddalena when she was born.

Today, some 10 weeks later, Maddalena is still in hospital, leaving Ms Dadd to go there every day to feed and be with her daughter.

“My bleeding began when I was only 12 weeks pregnant, so the entire pregnancy was riddled with anxiety and fear,” she said.

“The night I had the severe bleed was totally shocking and my immediate fear was for her survival.

“I thought to myself ‘there’s no way she could survive at 29 weeks’.”

Ms Dadd said in hospital, paediatricians warned her of risk factors for premature babies including long-term issues like vision and hearing impairments as well as cerebral palsy.

“However, the moment she was born all I wanted to know was — will she survive,” she said.

“Once Maddalena was born I have only cried twice — once when the baby sharing her room passed away at only three days old and once when Maddalena’s initial CPAP removal failed.

“These were both incredibly hard times, but the reality of life in the NICU.

To date, Maddalena has shown no sign of abnormalities.

“Generally speaking, at this stage she is doing really well and fingers crossed she continues to move in the right direction,” Ms Dadd said.

Maddalena is growing well.

“But what I’ve realised is that I’m one of the lucky ones.

“Lucky to have three beautiful children, lucky to have a loving and supportive husband and lucky to have such wonderful family and friends.

“And of course, we really are blessed to be living in this country with the best medical professionals and facilities — things could be a lot worse.

“It’s easy to say that all hospitals should have a uniform approach but they then all need to be set up to handle a 24 week old baby who has been resuscitated and parents need to be fully aware of the difficult journey they will embark on if that baby is resuscitated.”

If this story has brought up an issues for you contact the Miracle Babies Foundation on 1300 622 243 or Lifeline on 13 11 14.

Originally published as Every week counts: When should babies be given a chance to survive?