Mum’s nightmare as freak hernia left baby fighting for life

A mum has revealed how her baby spent weeks fighting for his life – and how a Bristol hospital saved him.

Emma Sheppard had a normal pregnancy with her first son, four-year-old Jayden, but her second was anything but.

The 26-year-old, of Tewkesbury, said: “In the lead-up to last Christmas I was wondering if my second child would be born on Christmas Day.

“Ronnie-James was due to come into the world on December 27. We knew Christmas was going to be disrupted – we just didn’t know quite how different it would be.

“In early December, I went for my last growth scan. I had a textbook pregnancy and no cause for concern until I saw the look on the sonographer’s face that day.”

Emma and her partner Scott, 24, could tell the sonographer knew something was wrong, but exactly what was still unclear.

She was referred for a scan at Gloucestershire Royal Hospital, where she was told Ronnie had a diaphragmatic hernia.

“There was a hole in his diaphragm which was allowing his stomach to move into his chest, squashing a lung and moving his heart,” she said.

She was informed Ronnie would be born at St Michael’s Hospital in Bristol and go straight to the neonatal intensive care unit (NICU) until he was strong enough for an operation.

“We were told it was a life-threatening condition,” she added.

“We still don’t have a clue how or why it happened. I was booked in for an induction just two weeks later.

“It was a shock, but I never had time to get my head around what was happening. We just had to go into automatic mode and make sure everything was ready for the birth.”

Though doctors had told Emma what would happen in St Michael’s, she says nothing could make her feel ready for December 19, the day Ronnie was born.

Ronnie-James in NICU

“They broke my waters, and I was in labour for an hour and 15 minutes,” she said.

“They had to paralyse Ronnie as he was being delivered and he was immediately whisked off to NICU and put on an oscillator, to help him breathe.

“An hour and a half after the birth, I was wheelchaired up to see him.

“Nothing prepares you for that sight, all the tubes and machines for your baby who’s only hours old.”

The doctors did not know how long Ronnie would be in NICU.

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“It could be days, weeks, or months until he was strong enough for the hernia to be surgically repaired,” she said.

“It was six days before Christmas, we were far from home and we had no idea when we would be able to return.”

She described Cots for Tots House as a “lifeline”. The Grand Appeal charity’s free accommodation allowed Emma and Scott to stay metres from the hospital.

Emma Sheppard, her partner Scott and their baby Ronnie-James

“The same day I gave birth we were able to move into a family room so that our son, Jayden could also be with us,” she said.

“At just four days old, Ronnie was strong enough to come off the oscillator and have his operation.

“He was lucky there was enough tissue to stitch up the hernia without the need for a patch, which could have led to complications.

“We were then given the greatest gift. On Christmas Day he was taken off his breathing tube and we heard him cry for the very first time.”

Emma was brought to tears by the emotion of the moment.

“It was Christmas, and he had just been through all of that,” she said. “He had been so strong.

“Having the opportunity to stay at Cots for Tots House, just across the road from Ronnie, for those frightening few weeks gave us more comfort than I thought possible at the time.

Ronnie-James at Christmas 2019

“You never felt alone, everyone there had poorly babies too – we had an unexpected support network, especially in Anne, the house manager.

“After a week in NICU, Ronnie was moved to the high-dependency ward and after a few days was able to start bottle feeding.

“Being so close to his cot meant I could go in and give him his last feed at night and first feed in the morning, something I would never have been able to do if we were having to travel to and from home every day.”

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Emma will never forget the moment on January 5, when St Michael’s staff put Ronnie in a car seat for 45 minutes and checked his breathing – before giving the green light for him to go home.

She thought Ronnie’s health struggles were finally over, but the following month his head swelled up and he had an urgent scan at Gloucestershire Royal.

“That was how we found out he had fluid on the brain,” Emma said. “We’d only had a month of relative normality.

Ronnie-James is now almost a year old

“It was a nightmare. It was a life-threatening illness, and we were told if we’d left it another week to get him seen, we wouldn’t have had our baby.”

Ronnie was diagnosed with Dandy-Walker Syndrome, a rare brain condition which has caused some development delays.

“All he does is roll over,” Emma laughed. “He’ll roll everywhere.

“He’s got blonde hair and blue eyes. He’s such a happy baby it’s unbelievable.

“He goes into the hospital and he’s always smiling. Everyone knows Ronnie in all the hospitals.”

Emma described the support the family received at St Michael’s after Ronnie’s birth – and Bristol Children’s Hospital after his Dandy-Walker diagnosis – as “immeasurable”.

The Grand Appeal needs your help

Christmas at Bristol Children’s Hospital will be very different this year – no panto for the young patients or bedside visits from Santa.

But the children from across the South West too sick to leave hospital just yet will spend their Christmas in hospital far from home.

That is why, as the dedicated charity for Bristol Children’s Hospital, the Grand Appeal is on a mission to make this Christmas as special as it can be for young patients. And they need your help.

In partnership with Bristol Live, this year’s Christmas Appeal asks you to make a donation, however big or small, to help give patients the very best Christmas possible this year. 

£20 could fund a present for a child or young adult spending their Christmas in hospital.

£50 could fund themed craft and play activities delivered by the Play Department.

£100 could fund four music therapy sessions, helping children to express their feelings and focus on something other than their treatment.

£200 could fund a week’s stay in our family accommodation allowing parents to stay close to their child and be together at this special time of year.

Help decorate the hospital’s special Christmas display and make sure every child in hospital feels some Christmas cheer. With traditional Christmas decorations limited to stop the spread of infection, The Grand Appeal has created 20 bespoke Christmas trees to bring extra special seasonal sparkle to the wards of Bristol Children’s Hospital. The trees will feature bauble stickers to represent donations over £50, and more importantly, show sick children across the region just how much people care.

Gather your colleagues, prime your pupils, recruit your friends and get ready for the BIG Christmas Dress Up.

This year, businesses, schools and individuals across the city are invited to don their jolliest jumpers, tinsel ties and glitzy get-up on Friday 4 December to raise money for sick children and their families. Every penny raised from Wallace & Gromit’s BIG Christmas Dress Up, sponsored by Nutricia, will help them get the care and support they need this Christmas.

As the Bristol Children’s Hospital charity, the Grand Appeal funds ground-breaking medical equipment, three family accommodation houses, 20 specialist support staff and a programme of art, music and play in partnership with the hospital and its Neonatal Intensive Care Unit at St Michael’s Hospital.

This year, despite a significant drop in fundraising income, the charity has continued to provide its services to support the staff, families, and patients despite the coronavirus pandemic.

These vital services have included providing family accommodation to parents, so they can be close to their child in hospital – as well as providing the funding for ground-breaking research into the natural history of Covid-19.

And Emma urged people to donate to the Grand Appeal, which supports Cots for Tots and the Children’s Hospital.

“If you have anything to spare, however small or large, please donate today to help sick babies and children in hospital get the care they deserve and families the support they need.”

You can support the Grand Appeal here.

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