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Bangor parents pay tribute to baby girl 'doctors tried so hard to save'

By Stephanie Bell

Devastated Bangor parents Marty and Emma Bell’s daughter Josie died when she was just five months old from a rare lung condition and other serious complications. Here, her dad pays an emotional tribute - and offers a public thank you - to the medical teams who cared for her.

A distraught dad whose baby daughter passed away just three weeks ago has paid a heartfelt tribute to the courage of his little girl who smiled through a gargantuan battle for survival.

The heart-rending story of little Josie Bell's short life is told by her dad Marty who is bursting with pride and love for the five-month-old who faced a series of complicated surgeries. Doctors did everything they could to try and save the fragile infant, but months of dedicated care just weren't enough.

Little Josie passed away on March 24 leaving a huge gap in the lives of her devoted family, mum Emma (35), dad Martin (28) and young brother Ollie (5) and sister Ava (3).

The Bangor tot seemed in full health when she was born which made her illness, detected just before Christmas, all the more shocking. Doctors said they had never seen a case like it after discovering the two-month-old baby's lungs resembled those of someone aged 60.

Josie came through a series of complex surgeries, which her dad said she smiled through until the very end when she shut her eyes.

She passed away peacefully in her mum's arms. Since then the family has gone to spend time with relatives in England to grieve after losing their beloved little girl.

Marty says: "She was so brave and so determined and we are very proud of her.

"She overcame a lot of hurdles which I think many kids wouldn't have got through. There is no doubt that it was absolutely horrendous what she went through, but she smiled the whole time.

"It actually gave us precious time with her. It is very hard, though, and we have good days and bad days. But we are a very close family and we are supporting each other. The positive thoughts we have of Josie help us cope."

Josie came into the world "a little smiler" and for the first two months of her life she appeared normal, healthy and happy, grinning all day long.

In December she developed a cough and Emma took her to their doctor who suspected she had picked up a viral infection and advised keeping a close eye on her.

A day later on December 6, though, she was struggling to feed and her worried parents took her back to the doctor who immediately rang for an ambulance to take Josie to the Royal Victoria Hospital in Belfast where she was treated for bronchiolitis and had to be resuscitated twice that night.

Her parents could never have guessed at that point that they would not get their beautiful baby girl home again or the major surgeries that lay head for her.

Over the next three months Josie came through many invasive operations on her tiny body and on several occasions it was thought she wouldn't make it, only for her to surprise everyone by pulling through.

In the end, though, her parents believe it was all too much for her.

Marty recalls: "When she went to hospital the doctors quite quickly put her on a ventilator which she stayed on from December 6 until March 24 when she passed away.

"CT scans were taken of her lungs and the doctor told us he had never seen anything like it before. Josie's lungs resembled those of a 60-year-old and they had no idea why.

"Four days after she was admitted to hospital she needed ECMO treatment which unfortunately wasn't available here and her only chance was to go to Glasgow where they had the ECMO machine, similar to a heart-lung machine used for open heart surgery, to oxygenate her blood."

After being taken to Scotland, Josie appeared to be doing well. Then on Christmas Eve her condition suddenly deteriorated. Marty and Emma received a night-time call summoning them to the hospital as she wasn't expected to make it.

Marty explains: "She looked really fragile and was critical, on the edge of passing away. She surprised everybody by rallying again and after a couple of days she was comfortable enough to come out of sedation. She was smiling and happy.

"You would expect the child to be miserable but she just kept smiling at us and really did look happy."

However, on January 3, doctors discovered a problem with Josie's heart. Her blood was overflowing into her lungs and de-oxygenated blood circulating in her body. A week later on January 10, she had to endure open heart surgery and, not for the first time, her parents were told to prepare for the worst.

Incredibly Josie woke up from the surgery with a beautiful smile on her face. Marty says: "It felt as though she was saying 'what are you getting upset about, I'm fine'."

Slowly she showed signs of improvement and doctors decided Josie was strong enough for a biopsy in an attempt to find out what was wrong with her lungs.

This involved yet more surgery. After the operation doctors decided to send baby Josie back to the Royal as she no longer needed the oxygen machine.

But Marty was worried it was too soon for his fragile daughter to make the journey. On January 30, Josie left Glasgow on a private jet with a medical team on board on her way back to the Royal Victoria Hospital.

Josie travelled in an incubation pod but the pressure in the cabin caused one of her lungs to collapse.

She was stabilised back in Belfast, but then developed trouble feeding. And there was more bad news to come as specialists found out she had a problem with her bowel.

This necessitated more surgery on February 2 when she underwent an operation to repair her bowel. She also had an appendectomy simultaneously and a procedure to insert a feeding tube into her intestine.

Marty says: "She was critically ill. We were signing forms again for major surgery and she was very weak. We were told the chances were that she wouldn't come out of this surgery.

"But again she did well. She was still sedated and was having good days and bad days.

"Three weeks before she passed away the medical staff told us that they had got to the limit of what they could do for her. They had given her all the operations and medicines they could.

"There was nothing more they could do for her," he adds. "They had to keep her sedated as she would have been in a lot of pain and was on life support. We had to make the decision whether to switch the machine off or not. As a father and mother having to choose whether to let your daughter go... I just couldn't do it.

"We always believed she could fight this and she had fought it all with a smile on her face. Then she had a serious episode and was on the edge of death.

"We had just left the hospital to go home and see the other children when we got a phone call and rushed back up. They had managed to get her back. At that stage she had been sedated for three weeks and we hadn't seen her smile or her eyes open.

"We decided that Josie was letting us know she was tired of fighting. It was time to give her a break and let her go.

"She wasn't in any pain but they were running out of options. Had she woken up she would have been in a lot of pain and that helped us to make the decision.

"On Thursday, March 23, all of our family gathered and the kids took hand prints and foot prints of Josie. We took pictures and we spent the day with her.

"The next day it was just me and my wife and the medical staff withdrew the care. Emma said she had brought her into the world and she wanted to be holding her when she left the world.

"I held Josie and then my wife held her, and she passed away in her mum's arms.

"It always felt that Josie had done things exactly as she wanted to do. As well many major surgeries she had blood tests, scans, X-rays and 90% of the time she had a smile on her face.

"As hard as it was and as hard as it is now, we are immensely proud of how much she fought. Josie came through so much and we are just very proud of her.

"A lot of bad things are said about the health service but with Josie we saw the good side. All the nursing staff and doctors were amazing, and not just to our baby, but they helped my wife and I too.

"We are really happy with the level of care she had and everyone gave her every chance."

While it's early days for the family, Marty hopes in the future to raise funds for the hospitals who cared for his daughter to keep little Josie's memory alive.

He adds: "We want to try and do something to preserve her memory in a nice way and keep her name going."

 

Devastated Bangor parents Marty and Emma Bell's daughter Josie died when she was just five months old from a rare lung condition and other serious complications. Here, her dad pays an emotional tribute - and offers a public thank you - to the medical teams who cared for her. By Stephanie Bell

Belfast Telegraph

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