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The day we were told our son had cerebral palsy.

Morgan Capper was 28 weeks pregnant with her first baby when she started bleeding and was rushed to hospital.

The prescribed bed rest for the 27-year-old didn’t last long. She had placenta previa and a fibroid so a natural birth was never going to be an option.

But while her husband, Brenton, was working out of town, she haemorrhaged and doctors decided she needed an emergency C-section.

“They gave me a general anaesthetic, knocked me out, and then while I was under they say that they couldn’t find Aston,” said Morgan Capper.

“So I didn’t just have the classical caesarean. They actually opened me up inside long-ways, they then used forceps to pull Aston out and fractured his left collar bone and he was not breathing for two minutes.”

Aston was born when Morgan was born ten weeks early. Image supplied. 

"You've overstayed your welcome."

Aston weighed 1550 grams and was 41.5cm in length when he was born. He was blue. It wasn't until the next day that the new parents were able to see their baby together.

"Brenton finally took me down to see our tiny son and it was such an amazing moment, I got to put my hand in to the humidicrib and touch him and let him know mummy and daddy were there," said Ms Capper.

Three days after her traumatic birth and before she'd even been able to cuddle her newborn son, Morgan says she was told by a nurse that she had "overstayed her welcome" at Mater Mothers Hospital and was discharged.

Morgan was still in pain and couldn't look at her C-section cut because she felt so bad that her son had been born too early.

"I begged the hospital not to send me home because I was still in a fair amount of pain and discomfort and the fact that I’d just had this premature baby which was born at 30 weeks, as a first time mum I had no idea what I was up for," said the Queenslander.

His parents finally get to snuggle. Image supplied. 

"Fluid on the brain."

After 10 days in intensive and special care in Brisbane's Mater Mothers, Aston was transferred to Logan Hospital which meant his mother could spend more time with him.

He slowly got better and was taken for a brain ultrasound to make sure everything was OK.

"When I ask what had happened and what the result was no one would tell me, eventually the head paediatrician came out while we were seeing Aston. She told me that they had found minor fluid on the back of Aston’s brain but it was that minor that we should not worry about it and it would resolve on its own," said the new mother.

Then another brain scan that was conducted four weeks later was said to be all-clear.

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"The next couple of months were perfect, Aston was growing and putting on weight really well and we were a happy little family," said Ms Capper.

Aston's first six months at home were "perfect". Image supplied.

"He hated tummy time."

"Around the six-month mark I was noticing that Aston was not hitting some of the milestones that he should have been.  He hated being put down for tummy time, wasn’t reaching for toys and nappies were very hard to change as he was very stiff.

"I brought it up with my paediatrician and was told that he would get there, it was just because he was born premature and he would catch up."

But he didn't.

"At my first physio session the physio told me that what we were dealing with was not muscular but neurological and I needed to see a neurologist to find out was going on. At my next paediatrician appointment, I relayed this information and was told to keep going to physio and see how things go and no referral to a neurologist," said Ms Capper.

After continuing Aston's physio appointments, Morgan booked in to see her paediatrician again and asked her husband to come too - she had a feeling they were about to get some bad news.

Aston doing physio. Image supplied.

"Our world was turned upside down."

"Sure enough, when we walked into the paediatrician's office and she said: 'We think he has quadriplegia cerebral palsy'."

"As you can imagine Brenton and I were absolutely devastated and didn’t know where to go and what to think.  Our world had been turned upside down," said Ms Capper.

Aston's parents didn't get a confirmed diagnosis until just before their son's first birthday.

"I will never forget the first thing our GP said to us - 'You two will need to work on your marriage and make it very strong and you have a very long and hard road ahead of you.'

"He then went on to explain that Aston has moderate Periventricular Leukomalacia (PVL).  An easier way to understand it is that it's a lack of white matter in the brain - the white matter is what moves all signals around the body to get your limbs to move," she said.

"We were given the results to go home with and as most people do, we started Googling to find out what to expect of this life we were about to lead with our little boy. It came up with all sorts of horrible things like seizures, loss of eye sight, severe cerebral palsy and many other things."

Aston's small family was utterly confused, now they had a diagnosis they had to find their own services - they had no idea who to contact or what therapies were available.

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Doctors then said he’d never walk or talk. Later on, his parents also discovered he had problems swallowing - known as dysphagia.

A speech therapist helped with Aston's swallowing issues. Image supplied. 

"We had to start on thickened liquids and Flavour Creations came in handy to us, because the commercial thickeners out there were creating some big issues and Aston hated the taste of them and wouldn’t drink and at the most I could get one bottle of thickened liquids into him a day, and when changing to Flavour Creations he actually went up to drinking a litre of fluids a day," said Ms Capper.

There finally started to be some light at the end of the tunnel. He was gaining weight with the liquid meals and he started talking. His mother says the disability hasn't stopped him being an intelligent, outgoing, social and happy boy.

"He talks and he’s actually smarter than your average three-year-old, he’s proving everyone wrong," she said.

Aston is a "very happy kid". Image supplied. 

"We’re still working on walking, he crawls and commando crawls if it’s quicker to get somewhere," she said.

"It makes me a bit upset as you can imagine, he should walk, they’re hoping by the time he’s five he’ll get up and walk or walk aided which is completely fine by me, even if he’s in a wheelchair - as long as he’s happy and healthy."

The 30-year-old has tried to pursue legal action over Aston's traumatic birth at Brisbane's Mater Mothers' Hospital but she was told an investigation found there was no fault.

A Mater spokesperson said: "The care of Ms Capper is now subject to legal proceedings. In light of it being a legal matter, it is inappropriate for Mater to further comment on this case."

Morgan Capper has now given up on chasing a legal battle. She is a young mum who has shelved her career and moved cities to find better treatments and services for her son.

She left her support network in Queensland and admits it's been lonely and difficult in Sydney.

"Unfortunately this is the life we’ve been dealt and we try our hardest to get everything right for Aston and do everything we can for him.

"I’d like there to be more awareness about cerebral palsy and some more help out there...it’s a lonely journey unfortunately and you can have so many friends with kids with cerebral palsy but no two kids are the same."

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