Preparing for the Christmas we didn't think our baby would see

The parents of a baby who was placed on life support the moment she was born are preparing for the Christmas they feared she would never see.

Emma and Mike only saw a quick glimpse of their daughter, Amelia, as she was rushed away by medics in the early hours of 22 May.

She had been born with a rare, life-threatening condition called congenital diaphragmatic hernia, which caused her diaphragm not to form as it should.

Amelia's parents met her properly for the first time on the intensive care unit at the University Hospital of Wales in Cardiff.

Hours later, Amelia was transferred to the Leicester Royal Infirmary (LRI) using a mobile extracorporeal membrane oxygenation (ECMO) machine.

She stayed on ECMO, which acted as her heart and lungs, in Leicester for a month and, during that time, underwent three operations before she returned to the hospital in Cardiff on 20 June.

Amelia was allowed home at the end of September, and her parents are now looking forward to the Christmas they "always dreamed of".

"She's like the best Christmas gift you could ever get," Emma said.

"We won't ever ask for anything else."

Emma and Mike, from Cwmbran in South Wales, found out about the hernia following a pregnancy scan in January.

Amelia's condition meant her abdominal organs moved into her chest while she was in the womb, affecting the development of her lungs and pushing her heart to the right side.

Mike said: "We had this scan and they tell us there's something wrong and we end up in a place that sort of haunts us to this day - a quiet room."

It was the kind of room the couple would find themselves in a lot in the first few months of Amelia's life.

However, the couple read as much as they could about the condition before Amelia was born to prepare themselves.

"From the moment she was born she was just silent - we didn't hear her cry or anything, she just couldn't do that just because of the way her lungs were working at the time," Emma said.

Amelia was unable to breathe properly and doctors were struggling to stabilise her.

Emma said: "They took us into a quiet room and they said, 'we're doing everything possible for her but we're really not getting her stable, we really need help now'."

Amelia's parents believed she would die that day.

"We called in family for that reason," Emma added. "We thought it would've potentially been the only time they'd have met her otherwise."

When there was nothing else staff at the hospital could do, doctors called for help from the University Hospitals of Leicester (UHL) NHS Trust.

According to UHL, it is the only trust in the country with a mobile ECMO machine that can be used in transit.

It meant medics from Leicester could travel to Amelia in Cardiff, place her on the ECMO machine and transfer her back to the LRI with her parents in convoy.

Amelia was only seven days old when she underwent surgery to move her abdominal organs out of her chest and repair the hole in her diaphragm.

As her abdominal organs had grown outside their normal space, they had to be placed in a silo bag outside of her body.

Hours later, the patch used to repair the hole blew due to internal bleeding and she underwent a second emergency surgery.

Several days later, Amelia had her third surgery to guide her abdominal organs back into place.

Amelia was able to come off ECMO after about 25 days and she was transferred back to the University Hospital of Wales by helicopter in June.

She later had one more operation to close a hole in her oesophagus - a complication of one of her earlier surgeries.

Amelia was finally allowed home at the end of September, with hospital staff lining the corridor and applauding the family as they left.

"That'll stay with us for the rest of our lives," Mike said. "The feeling, you can't describe it.

"From where we were - that time we were in Cardiff we had very little hope - and then to come back and go out those doors with her was incredible."

The couple were previously told if Amelia did survive, they were likely to be in hospital for a very long time and probably wouldn't be home for Christmas.

"We didn't buy many clothes during pregnancy because we knew there was a chance we wouldn't be coming home," Emma said.

"The fact that we can buy her clothes now is just everything.

"It's just been a year of such joy and such sadness and the two are sort of wrapped around each other."

A few months on from Amelia's homecoming, her parents said her recovery was going well.

The six-month-old still has small lungs and is fed through a pump while she recovers from her last operation.

However, her parents said she was putting on weight and "progressing on her milestones".

Emma and Mike praised the work of staff and medics in Cardiff and Leicester for saving their daughter's life.

"Those two places working together like that is the reason we get to have this Christmas with her and bring her home," Emma said.

Mike added: "We're now in the situation where we can really enjoy the time with her and celebrate Christmas in the way we always dreamed.

"She is an absolute hero. She's my hero and she inspires me every single day."

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