WHEN Laura and Ryan Johnstone discovered she was pregnant, shortly after their honeymoon, the couple were over the moon.
Despite suffering with extreme morning sickness, nothing could prepare the couple for their 20-week scan, and a complication that caused their worlds to come crashing down.
While waiting to find out the gender of their unborn baby, the couple were told a cyst had been found on the umbilical cord.
The growth, which would grow to the size of a grapefruit, meant their baby girl was given just 23 per cent chance of surviving.
When Amelia was born eight weeks early and weighing just 3lb in May 2023, Laura feared the worst – and refused to name her baby girl for three weeks, instead referring to her as ‘baba’.
Laura, now 42, from Worthing, West Sussex, said: “I feel as though I’ve lived every parents’ worst nightmare.
“From being told my baby might not survive, to seeing her struggle and be born weighing a tiny 3lbs – it’s certainly taken its toll on my and Ryan’s mental health.
“Amelia has just celebrated her first birthday – she’s crawling, babbling and is a social butterfly.
“She loves being read books and playing with her soft toys. And Ryan and I are beyond excited to see her grow.
“That experience did affect us both, though. We’re different people because of it.
“And we definitely don’t want to go through it again – so much so that we’ve decided we don’t want to have any more children.”
Laura, a podiatrist, and Ryan, 38, who works in elderly rehab for the NHS, tied the knot in October 2022 after being together for three years.
They were keen to start a family and Laura became pregnant on their honeymoon in Tenerife, Spain, in October 2022.
But Laura, who was due on July 27, 2023, suffered from extreme morning sickness and was unwell every day of her pregnancy.
She also suffered with hypermobility and her hips, knees and ankles kept dislocating from 16 weeks.
But when she went for her 20-week scan at Worthing Hospital at the end of February, the sonographer revealed there was a growth.
And a scan revealed it was a rare cyst that measured 2in by 2in (5cm by 5cm) growing on Laura’s umbilical cord.
“We had decided to find out the gender during the scan but when we were in with the sonographer, I could tell something wasn’t right,” Laura said.
“She said the baby’s head had a growth on it, which was actually a cyst on my umbilical cord that was extremely rare – so rare that they had never seen it before.”
Laura was referred to Princess Anne Hospital in Southampton the following day, where experts were also baffled, so she was referred to Saint George’s in Tooting.
If I’d have coughed or even sneezed, the whole procedure could have gone horribly wrong
Laura Johnstone
Laura said: “We had some of the best neonatal doctors in the country looking after us and all they had to go by was one case study from 2005.
“We were told our baby had a 23 per cent chance of survival and then I found out I would have to undergo an in-vitro blood transfusion at 23 weeks. It was horrific.”
A purpose of a fetal transfusion is to give a baby life-saving blood until it can be born.
Laura said: “The blood transfusion itself was horrifying. I wasn’t allowed to move.
“If I’d have coughed – and I had a chest infection at the time – or even sneezed, it could have gone horribly wrong.
“I silently cried as the doctor had to have his arms on my arms to ensure he kept his hands still because when he was doing it, he had to be there for 25 minutes and he only had a 0.16in (4mm) window.
“In the 12 weeks that followed, we were in Tooting 19 times and each visit was at least eight hours long because we had to factor in travel time.”
Laura’s mental health suffered and she wouldn’t allow herself to feel too attached to her unborn baby, and she feared the worst would happen.
She had a scheduled C-section as it was determined the safest option for Amelia’s arrival.
Baby Amelia was born weighing 3lbs in May 2023 at 32 weeks at Princess Anne Hospital.
Two cysts were found – one the size of an adult kidney and the other the size of a grapefruit.
Laura said: “We have two photos at home which are very dear to us as we call them our ‘Lion King moments’.
“When Amelia was born, I couldn’t bring my eyes to look at her as I was desperately searching in the neonatal doctor’s eyes for a sign that she’d live.
“In the first picture they look petrified and like everything is going to hit the fan.
“I think they were prepared for it to be an extremely tough moment and they did not know how she would do.
“But in the second photo she incredibly started crying and the relief on the doctors’ faces says it all.
“It was completely surreal. One minute we were being told she might not make it, then she was here screaming, then she was on me and then she was gone.”
After 30 seconds of Amelia finally being placed on Laura, the newborn was whisked away to the neonatal intensive care unit.
Three hours later, Ryan was allowed to see her – but was told not to touch Amelia until Laura had to ensure mother and baby bonded.
She spent five days in Princess Anne Hospital before being moved to Worthing’s special care baby unit for five weeks.
Laura said: “I found it very difficult. I was completely overwhelmed and traumatised, worrying if we were going to lose her.
“I was scared to pick her up for the first week and I actually couldn’t, people had to give her to me.
“I had immense fear and anxiety the whole time.
“We were still unsure if our baby was going to make it, it was just hideous.
“I didn’t even call Amelia by her name for three weeks.
“It was just ‘baba’ or ‘baby girl’. I couldn’t say it, because if I did, I was scared that I was going to lose her and I would’ve made a connection and I couldn’t do that.”
Finally, on June 27, Laura was given the news that Amelia could go home two days later.
Laura said: “Going home as a family of three was really hard.
“If there’s any issues while you’re in hospital, the staff are right there.
“Then, suddenly, you don’t have that, there is such anxiety.
“I was panicking thinking, ‘Oh my god, am I doing this right?!’
“She was so tiny – by the time she went home, she was an ounce off being 4lbs.
“Then when my health visitor came – I was already on the list as I was suffering with postnatal depression – she told me my visits were going to be increased at Christmas when we started weaning.
“But sadly, no appointment ever came.”
I felt so alone and I didn’t want anybody else to actually suffer like I did
Laura Johnstone
Feeling alone, in March 2024, Laura started her own podcast The Good, The Bad and The Parenting Journey.
She also got involved with a charity called Ickle Pickles, which helps premature babies.
Laura said: “It was at this point that I realised that I needed to give back and became a supporter of Ickle Pickles.
“And then, consequently started my own podcast, to help promote community in parenting.
“I felt so alone and I didn’t want anybody else to actually suffer like I did. Everyone who’s listened has thanked me.
“One lady, whose daughter was preemie at 24 weeks, messaged me privately to let me know how much my podcast meant to her and to listen to someone else that’s been through it has helped her cope.
“If I’m helping just one other family, that’s all that matters.
“People don’t realise how many babies are born premature.
“It’s a really taboo subject and I am determined to change that.”
Amelia, who has just celebrated her first birthday, is now thriving.
“She’s meeting her milestones and is crawling and babbling away,” Laura said.
“She’s a happy little girl who is very social, loves to be adventurous and get involved.
“Plus she’s a total daddy’s girl. She even got her very first tooth on her first birthday.”
But the experience has put the couple off having any more children.
Laura said: “Our family is complete and we’re happy.
“Amelia has recently had her 10-month review and while she’s not loving her food too much, she’s thriving in all aspects.
“She doesn’t like anyone fussing with her.
“We can’t wait to continue celebrating our miracle daughter after a memorable year.”
