A dad who expected to bring healthy twins home from hospital has bravely spoken of his heartbreak after one baby died and her sister was left disabled from birth.
When Jamie Osborne was pulled away from a work meeting to urgently attend the only scan he missed, he bought himself a red bull in preparation for the twins’ birth.
But as he arrived to meet 30-week pregnant wife Lisa at Worcestershire Royal Hospital, he learned the tragic news of stillborn Phoebe – and later that identical Chloe was critically ill.
They spent five days between the bereavement unit holding their lost daughter and intensive care where Chloe was fighting for her life.
The husband and wife were told their surviving twin, who had suffered brain damage, would likely have cerebral palsy – but they had no idea how severe her disabilities would be.
Now five years on, ‘bright spark’ Chloe can’t talk or walk and is wheelchair-bound, but her parents are determined to give her the ‘best future’, with all the technology possible to help her thrive.
“I expected to be walking out of the hospital with two baby girls but we ended up walking out with one baby girl who was most likely to be severely disabled,” recalled Jamie, who wrote a blog to reflect on the difficulties from a male perspective.
“It was difficult because, what should you think, what do you feel? Should you be grateful that you’re in that situation – people have been through a single pregnancy and lost a child and they don’t have that.
“Chloe made it out of hospital, she made it home. We are eternally grateful that we have Chloe, she’s a bright spark, we’re fortunate that she’s with us.”
The girls suffered from twin to twin transfusion (TTTS) and so Jamie and wife Lisa, 33, knew the pregnancy wouldn’t be without complications.
According to the NHS twin to twin transfusion is caused by abnormal connecting blood vessels in the twins’ placenta.
This results in an imbalanced blood flow from 1 twin (known as the donor) to the other (recipient), leaving 1 baby with a greater blood volume than the other.
Research suggests the majority of TTTS twins who have appropriate treatment during pregnancy will survive and the majority of survivors will be normal and healthy.
If untreated, the survival rate for TTTS twins is approximately 10 to 15 percent.
“We knew it wouldn’t be easy, but I just always thought everything would go to plan,” he said, reminiscing on the difficult period through winter 2015.
“From our view it was actually improving. I’d been to every one of the scans, but I had a work meeting on the day of the scan which showed that Phoebe had passed away.
“My wife was in Worcester and I was in Leicester. I came back and I made a decision to buy a drink to be prepared and have energy for the hours ahead.
“They don’t tell you why they want you to come back, because they don’t want you to drive crazily back to the hospital.
“Lisa had been rushed in for the c-section; I had missed seeing her by a fraction, that toilet break and grabbing a drink had meant that I had missed her going in – small decision, big outcome, something rationally I know I couldn’t have known.
“Now I still kick myself and think it was a mistake.”
While Phoebe had passed away, tiny twin Chloe – born ‘pale and floppy’ and weighing just 2.6lbs – was still bravely fighting for life.
Jamie and Lisa spent five days holding stillborn Phoebe and grieving their loss, but all the while were trying to focus on Chloe’s intensive care battle.
“That was a very difficult period,” Mr Osborne added.
“Chloe was so small, she was hooked up to so many tubes and wires you could barely see her, but she was there, fighting.
“In between seeing our daughters, Lisa and I rattled around the hospital. It was a surreal experience sitting in the café, going for lunch, watching the world around you continue, people not knowing your story, not knowing your pain.”
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Chloe had been born on the Tuesday, but by Sunday, she suffered a perforated bowel and needed specialist emergency surgery.
In the middle of the night, the family were blue lighted to Bristol Royal Hospital in the back of an ambulance.
“Phoebe was there in Worcester and we had to leave her. We had to leave her in hospital,” Jamie explained.
“Chloe was in intensive care for eight weeks and all that time we were down there we were having to arrange Phoebe’s funeral.
“Lisa was very much trying to focus on Chloe, doing all the things a mother would do for a newborn, she still wanted to give her milk so she would take milk and put it into the tiniest of syringes.
“It was something to focus on.”
While in Bristol, they were told a lack of oxygen at birth meant Chloe was likely to be disabled. When she was one-years-old, she was diagnosed with quadriplegic cerebral palsy and global development delay.
“Immediately I was thinking how is this going to affect the next, how many, years of our life,” said Jamie.
But as their daughter, now five, has grown up – the worries he had in that moment have “become the day to day”, he added.
Their daughter, who has two brothers – a seven-year-old and an eight-month old – can neither talk nor walk.
“It’s difficult, she’s wheelchair bound,” Jamie said.
“Raising a family is a challenge at the best of times, but the additional levels of care and support that she needs.
“She’s fed through a tube directly into her stomach, she’s fed by us, changed by us, washed, clothed. All aspects of her life are done by myself and my wife.
“Chloe is bright as a button, her smile lights up a room. She’s aware what’s going on around her, that’s nice because you know you can get a smile out of her and you’ve got that interaction.
“It’s tough and it has been exacerbated over the last 12 months, but she’s an amazing little girl and we just want to give her the best opportunities to thrive, not just survive.”
Through completing various challenges including ‘the walk home’ from Bristol Hospital to their home in Redditch, friends have raised an amazing £21,000 for Chloe via a GoFundMe page.
She has a stander to help with her hips and she also has specialist care at her school, including an eye gaze tool.
The family plan to use some of the money raised to buy an eye gaze tool for their home, so she can use it more frequently.
She also an upcoming operation booked on her hips in April and the family are planning to use some of the donations to provide additional physiotherapy, giving her “the best shot at recovering” from the surgery.
“She’s still young, she can still develop,” the dad-of-three added.
“It would be great that we could see the technology put in place so we can see her succeed so we can have more of those little moments where we think ‘yes, she actually understood us’.”
Looking into the next five years, Jamie knows there will be many more expenses to help provide Chloe not only her basic care and support, but technology to help her thrive.
Fortunately, his close friends have more fundraisers planned over the next year to help encourage donations towards her future.
“We have to adapt the house, get the right access vehicle for her,” he said.
“Eventually maybe she could look at a toy on a screen and make it move, so she’d be doing something herself and not everything would be done for her.
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“It would be just nice to know that if something comes up for her, the money is there and we’re not then trying to figure out a way at that point.
“It’s giving us the freedom to give her the brightest future we can.
“We are so, so lucky and Chloe is so lucky that she has so many people who want to support her and have access to some basic things which will help her. The support has been overwhelming so far.
“Firstly, to have friends around us who wanted to do this on our behalf, and just the support of the general public to say they want to help Chloe has been amazing.”