‘NO ONE KNEW IF I WOULD SURVIVE’
Teen’s family told to say goodbye as she turned black from sepsis
THE parents of a 16-year-old schoolgirl were told to say goodbye to their daughter after she was resuscitated twice and began to turn black from sepsis before she made a miraculous recovery.
Ellie Harris fell ill with sepsis in December 2019 after spending four days with a high temperature and vomiting.
Mum Katrina Harris said by the fourth day Ellie had taken a turn for the worse and was starting to act delirious, so she and Ellie’s dad, David, rushed her to their GP.
Katrina said the doctor took one look at her and immediately called for help from colleagues, and an ambulance was on its way as Ellie entered cardiac arrest.
Ellie, from Church Village, near Pontypridd, was blue-lighted to the Royal Glamorgan Hospital in Llantrisant where she was resuscitated twice.
“All I remember was we were going into the resus area after her and she was just going black with all rashes on her.
“We were ushered off to one of those Wish Upon a Star rooms and I thought, ‘I know what these are for.’ I can’t remember walking downstairs to see her, they said, ‘Unfortunately we don’t think there is anything else we can do.’
“It was just absolutely horrendous. They said, ‘Call your family to say their goodbyes.’ The family was rushed down and the next thing the consultant said, ‘We think she meets the criteria for ECMO,’” explained Katrina.
An ECMO machine is a special life support machine which works your lungs and heart for you so you don’t have to. It was hoped this would take the pressure off Ellie as her internal organs had begun to fail from the sepsis infection.
There are only five places in the UK, none in Wales, where ECMO machines are available, and they cost around £100,000 to use per patient.
“A team of about five or six doctors and consultants came down from Chelsea, they hooked her up to the machine and blue-lighted her up to the hospital there,” said Katrina.
Ellie spent 10 days on the ECMO machine, and her family were told she had a 60% chance of survival. There were two other teenagers in a similar situation to Ellie on the machines at the Royal Brompton Hospital in Chelsea at the time, and sadly one of them passed away while Ellie was there.
Ellie said: “No one knew if I would survive the long journey to London, but a couple of hours later, the doctors called my parents to tell them that I’d made it.”
Ellie, who is now 17 and has returned to school at Ysgol Gynradd Gymraeg Garth Olwg, doesn’t remember anything from the time she was taken to the GP up until a couple of days after she came off the ECMO machine.
She spent 10 days on the machine in London, and said the first day she was hooked up there she was actually supposed to be on a school trip to the city.
“My friends found out I was in hospital when they were on the bus to London and they were really upset. When they got there they went to a church and got all these praying stones. And my best friend Katie came up to visit me in hospital on Christmas Day.”
Ellie spent Christmas and New Year on life support before she was able to return to the Royal Glamorgan Hospital, where she was told her recovery could last until March.
Miraculously, Ellie spent another 10 days in hospital before she was well enough to go home and returned to school in March 2020 before the country went into lockdown.
“My physical recovery was fine, I got back to normal in a couple of months, but I used to have nightmares and panic attacks at night. I would always think: what if I had died?” said Ellie.
She has since seen a psychiatrist to recover from the PTSD she developed after going through the traumatic experience. She is also looking forward to starting to play for Cardiff City ladies later this year.
“It was just an absolutely horrendous time,” added mum Katrina.
When Ellie came around, one of the first things she remembers is seeing her dad’s face, and a touching photo captured the moment she reached towards him.
Since then, Ellie and her family, including brother and sister Jay and Rebecca, have been dedicated to raising awareness of the symptoms of sepsis in young people and teenagers.
The family’s local rugby club, Beddau RFC, also held a fundraising event in February 2020 to show their support for what Ellie had overcome.
Ellie shared her story with the UK Sepsis Trust and is raising money for the Royal Brompton Hospital, where she was treated on the ECMO machine.
She added: “I am extremely grateful for all of the nurses and doctors, and my family and friends who have helped me become stronger.”
■ To make a donation visit www. rbhcharity.org/fundraisers/elliesecmo-appeal
JULIETTE ANDERSON has been in agony on an almost daily basis for half her life, the pain so intense it causes her to collapse and have seizures on her bathroom floor.
Her hands and face are covered in scrapes and bruises where she has knocked herself during her frequent non-epileptic fits – she’s had three in the past week alone.
She rarely leaves her home in Cardiff and spends hours on the sofa with a hot water bottle pressed to her tummy in a bid to relieve the excruciating pain.
Her husband Mark has done his best to adapt the house so she doesn’t bang her head, but for the most part he can only look on helplessly as her body goes into another violent seizure.
Juliette has endometriosis, a littleunderstood and widely unknown condition that affects one in 10 women in the UK.
Put simply, endometriosis is a condition where cells similar to the ones in the lining of the womb are found elsewhere in the body, forming lesions, cysts and other growths.
Each month these cells react in the same way to those in the womb, building up and then breaking down and bleeding. Unlike the cells in the womb that leave the body as a period, however, this blood has no way to escape – causing chronic and sometimes debilitating pain, as well as affecting fertility and other parts of the body such as the bowel or bladder.
Each case is different. There is no cure. Those who have it have to learn to live with it. The pain may briefly lessen, but it is only a matter of time before it comes back with a vengeance.
Juliette wasn’t diagnosed until she was 42, after she’d had two children, four miscarriages and a failed hysterectomy.
“It was very late, considering my history,” Juliette said.
“I had my daughter and then I had four miscarriages and they told me I couldn’t have any more kids, but they didn’t actually look into anything or find out why. They just said it’s highly unlikely you’ll be able to carry but now looking back, it was obviously endometriosis.”
Juliette had always thought there was something wrong with her. Ever since her teens, she had “ridiculously heavy” periods that would last two or three weeks. Things got a lot worse after she had her first child, Becky, when she was 18. She started passing out from pain so severe it caused her to have seizures.
“I always had heavy periods but I was told it was normal,” she said. “It got a lot worse after Becky and then the passing out started.”
She was sent to epilepsy clinics but tests came back negative and doctors told her she was having non-epileptic seizures brought on by pain. Then they sent her on her way.
But Juliette, who had son Joshua six years after Becky, knew something wasn’t right.
“I kept going to the doctors and I was crying, saying I needed a hysterectomy. I can’t cope with my periods, and they said: ‘Are you having any stress at home, is it all in your head?’
“But you doubt yourself then, I got really bad, and depression hit.”
With the support of her husband Mark, whom she met when she was just 16, she kept pushing for doctors to carry out a full hysterectomy.
“When they said they would do it, I
cried because I was so happy,” she added. “I finally thought there was light at the end of the tunnel.”
After doctors reluctantly agreed to perform a full hysterectomy in 2014, Juliette came round from the operation to be told they hadn’t managed to do it after all. The surgeon had discovered her womb was riddled with endometriosis and it had spread to her bowel. He needed the help of a bowel surgeon.
She was 42 years old and had no idea what that meant.
“When I was first diagnosed I’d never heard of it,” Juliette recalled.
It was another 12 months before she had a full hysterectomy and she is now waiting for another operation to remove a large section of her bowel which has been damaged beyond repair. It’s not endometriosis that causes Juliette’s fits, but the excruciating pain that goes along with it.
“I get non-epileptic seizures, which is related to the pain,” the 49-year-old grandmother said.
“When I’m in so much pain my body reacts and it shuts off and I just collapse and have a fit. The endometriosis has damaged so much of my bowel they can’t just cut that bit out. It’s like a cancer, the way it spreads.
“Nine times out of 10 I have a fit when I’m on the toilet when I’m opening my bowels and the pain is so severe I just end up on the floor. There’s no warning: it just comes on.”
The operation, which will see a large part of her bowel removed and replaced with a colostomy bag, has been delayed because of the coronavirus pandemic. Juliette says the procedure would have been completed in March last year otherwise.
“The last year has been terrible – the pain is a lot worse,” she said. “I’m having two, maybe three, fits a week. I’m always marking my face.
“The pain is just constant, it never goes. I’m taking morphine and I sit here with hot water bottles on my stomach, which does relieve some of the pain.”
It’s not just the pain that affects Juliette but everything that goes along with it, including her own mental health and any chance of intimacy with Mark.
“The kids are grown up now, this is our time,” she said.
“We should be enjoying our life now, but we haven’t even slept together for six months. I’m lucky I’ve been with him for so long, for him to understand these things. Because the pain is so bad, he says he won’t put me through it.”
Her condition is almost as bad for Mark, she thinks, because “he watches me day in day out”.
“He’s got to deal with me on the floor and there’s nothing he can do to help,” she added.
“He’s just got to step over me when I’m on the floor.”
Normal life is out of the question and she can’t look after her two grandchildren, who are six and two, on her own.
“I haven’t got a life, I’m just existing,” she said. She gave up work in her twenties after the pain and seizures got too much.
“I don’t go out, I can’t even have my grandchildren if I’m on my own in case I collapse. They’ve been here when I’ve had a fit. The eldest is good – she just moves my head, checks I’m OK, gives me a kiss and says ‘I’ll just go and get mummy.’”
For now, Juliette is pinning all her hope on the operation that will leave her with the colostomy bag: “Even if I’m half as pain free, that’ll be a bonus,” she said.
“After the operation I will have a better quality of life, maybe even get a little part-time job or take the kids to the park.
“I’ve got to just keep thinking that – that it will be for the better. I’ve got no choice really.”
Juliette runs a Facebook support group for fellow sufferers which has more than 2,000 members all over the world.
“We just want to be believed,” Juliette said.
“People say, ‘Oh you’ve got a bad period, so what, it’s normal.’ But it’s not normal. You look OK on the outside but on the inside it’s not.”
The Charity Endometriosis UK said that women in Wales were waiting on average for nine years for a diagnosis, which compares to a UK average of eight years.
It also said women were now having to wait longer because of delays related to coronavirus – but said a greater awareness of the condition from a younger age could help reduce diagnosis times.
Member of the Senedd Suzy Davies, who was diagnosed with endometriosis in her late 40s, has called for the topic to be compulsory in schools and this week tabled an amendment on Menstrual Wellbeing in the Curriculum and Assessment (Wales) Bill.
A previous amendment was rejected by a majority of the Children, Young People and Education Committee.
Fair Treatment for the Women of Wales, a patient-led women’s health equality charity, has been campaigning for menstrual wellbeing education in Wales for the past two years and is urging the Government to act.
In a statement, the group said: “We believe that menstrual wellbeing needs to be on the curriculum in Wales to ensure that we overcome taboos and misconceptions which see periods and associated issues like heavy bleeding and pain either go unspoken or dismissed as being ‘normal’. Far too many pupils are not getting the best out of their education as a result of their periods, and future health and prospects are also affected.”
LIKE any other four-year-olds Marieme and Ndeye Ndiaye are settling in to school life. But the fact they are even alive is a miracle. Doctors feared the conjoined twin sisters wouldn’t live for more than a few days when they were born.
Now they are learning to walk and starting their journeys in education.
Marieme and Ndeye were born in Senegal in May 2016 and their father Ibrahima was told they may only have a few days or weeks to live.
Ibrahima brought the girls to the UK in 2017 to receive treatment at Great Ormond Street Hospital in London, and the family settled in Cardiff.
Now, at four years and nine months old, Marieme and Ndeye have started primary school in Cardiff as well as learning to stand and walk with the help of staff at Ty Hafan Children’s Hospice in Sully, Vale of Glamorgan.
Ibrahima said the girls are popular faces at Mount Stuart Primary and are each making new friends after starting there in September.
“It’s going very well and it’s good for them to be in school,” Ibrahima said.
“There is no technical or practical problem the staff won’t overcome to have them at the school.
“They’re doing whatever’s possible to help them to be part of the group of children and doing all the activities the other children are doing.
“They enjoy it such a lot. They are making a lot of friends over there and it’s delightful to see them interacting and socialising with all the kids. It’s very important to me to see that happening.”
In 2018, doctors were concerned that Marieme’s heart was growing weaker, and she was mainly being kept alive by her sister.
They faced the extraordinary decision of whether to risk separation in order to save Ndeye’s life, but further examination found that this was not possible.
Doctors eventually discovered the girls’ circulatory systems are closely linked and it would be impossible for either child to survive separation.
Marieme receives oxygen from her sister’s stronger heart and has a number of complex issue that cause her problems with exercise.
“Ndeye is a little bit ahead of Marieme when it comes to socialising,” Ibrahima said.
“Marieme is a little bit introverted and Ndeye enjoys being at the centre of everything and everybody.
“So they are very different personalities, but they are doing very well. When it comes to school the teachers are pleased with the progress they are making every day.
“With Marieme it’s a little bit complicated because they have to deal with her condition and make sure she has some breaks when she needs to.
“It’s a little bit challenging for her, but at the end of the day it’s all OK.”
Ibrahima said it has been one of his dreams to see his daughters going to school, and it brings him joy to see them in their uniforms.
“School was one of the steps I always prayed for to happen and now it’s happening,” he said.
“You can’t imagine the joy for me to see them in school uniforms and sharing with other children despite whatever condition they are going through.
“They have shown their resilience every day and a strong desire to be a part of society.
“The pride I have for them every single day when I see the things they are doing. From surviving first, that was a huge achievement and then doing things like standing and going to school every morning.
“You can see a lot of joy. A lot of joy.”
Alongside school, the children make weekly trips to Ty Hafan Children’s Hospice in Sully, Vale of Glamorgan.
Therapists at the hospice have been using a walking frame to begin the process of helping Marieme and Ndeye to learn to stand and walk.
Ibrahima said both girls have been making a lot of progress.
“They are going to Ty Hafan every week to enjoy a short break, which gives me time to sort things out at home,” he said.
“They have the standing frame over there that the physio team have put in place to put them in the straight forward position.
“The therapist there is doing a brilliant job and all the Ty Hafan staff are doing whatever possible to do help them to walk one day. That is what we all pray for to happen.”
Ty Hafan opened its doors 22 years ago and has been a lifeline for children with life-limiting conditions and their families ever since.
After more than two decades of being used 365 days a year and providing essential around-the-clock care to more than 1,000 children and families in Wales, Ty Hafan’s hospice in Sully needed essential refurbishment to ensure that it can continue to help families.
In January last year, the hospice began a campaign to raise £1m to fund the refurbishment and are now about £50,000 away from reaching their target.
Ibrahima said he is filled with gratitude to the hospice, and urged others to help Ty Hafan and the families they support.
“I enjoy living here to be honest,” Ibrahima said.
“This is what we wanted. A very calm and stable environment where you see other families wherever you go.
“It’s the respect you receive from people, or the support you receive wherever you are going.
“Sometimes when I’m taking the girls to school or we’re having a walk, you see people coming and saying hi to the girls, and wishing us the best and giving some encouragement.
“It’s a huge psychological support I’m receiving from this city.”
Beth Morgan, head of Hospice at Ty Hafan, said: “All of us at Ty Hafan are so pleased to be a part of the lives of Marieme and Ndeye, and their father Ibrahima.
“Despite the many challenges the family are currently experiencing, the girls continue to thrive. They are growing up fast and with every day their personalities are shining through.
“At Ty Hafan the focus of our work is about enabling quality of life, and making short lives, full lives.
“We will work with Marieme and Ndeye, and their father to support them in whatever ways we can, for as long as they need us to.”
To find out more about Ty Hafan’s fundraising appeal at www. tyhafan.org
WAs Wales waits to hear what Rishi Sunak has in store for the country this week, Plaid Cymru MP Ben Lake, left, says this budget is the Chancellor’s opportunity to set out a recovery that will secure jobs today and rebalance the economy for tomorrow
HEN the Chancellor steps up to the despatch box on Wednesday, he will have the choice of either protecting taxpayers’ investment in our recovery, or pulling the plug too early and letting it all go down the drain – and the recovery along with it.
This is his chance to set out a recovery that will secure jobs today and rebalance the economy for tomorrow.
The numbers on Wednesday will no doubt be staggering. The UK’s GDP declined 9.9% in 2020, the steepest drop since reliable records began in 1948, and across the UK unemployment is at 5.1%, though things are marginally better in Wales.
The public finances will on face value look unhealthy – the OBR has estimated that the public sector has borrowed £270bn, while net debt stands at 97.9% of UK GDP.
Yet these sums, borne by the taxpayer, have enabled unprecedented support to people and businesses across the UK. Approximately 26% of UK businesses have been offered a government-backed loan and while imperfect, the furlough scheme and self-employed support have helped prevent mass unemployment.
In recognising this, we must remember two things. Firstly, that while promising, we remain in the early stages of a vaccine-led recovery with a high degree of economic and health uncertainty in the short to medium-term; and secondly, that the Budget, despite its economic focus, is a political exercise.
Reports abound that the Chancellor, a self-professed fiscal conservative, is eager to slash spending on support schemes and increase taxes in the name of “fiscal discipline”. This is less an economic term and more a watchword for the Conservative Party on how to differentiate themselves politically from the Labour party.
“Fiscal discipline” is code for austerity, the destruction of which is still felt in communities across the UK.
Difficult decisions on taxation will have to be made, of that we can be certain. However, they should not be made in the middle of the pandemic, and when so many businesses remain under restrictions.
Our economy was in crisis prior to the pandemic. Restrictions may well remain in some form for many months yet, and businesses will struggle for some time. Austerity will only exacerbate our problems.
Consequently, to protect incomes and jobs, Plaid Cymru not only believes the Universal Credit uplift must be continued, but that the furlough and self-employment scheme must be extended with alterations for the next financial year.
Waiting for the health crisis to subside before drawing these support schemes to a close makes economic sense. Doing so would ensure continued support for businesses and employment while we gain a better understanding of, and adjust to, the new market conditions.
Equally, by extending and expanding the Self-Employed Income Support Scheme to all those with a 201920 tax return, we would address the exclusion of workers from UK government support throughout the pandemic. The Treasury should also consider how support can be directed to company directors, as proposed by the Federation of Small Businesses.
Furthermore, we strongly urge measures to boost consumption and business revenues in hard-hit sectors like hospitality, such as the extension of the VAT reduction for the next financial year and expanding it to include the sale of alcohol on premises to support the hospitality sector across the UK.
While these are undeniably expensive measures, we believe that the Chancellor must not run the risk of wasting taxpayers’ money by pulling the plug on support too early, particularly when the UK can borrow at record low interest rates.
Ending support and raising taxes now will depress demand, increase unemployment and undermine our recovery.
Finally, we will be calling on the UK Government to lift its ungrounded and restrictive borrowing cap on the Welsh Government to grant Wales the financial powers to invest in our priorities. Having undermined Welsh democracy through the Internal Market Act, the Shared Prosperity Fund and now the Levelling Up Fund – the UK Government must now signal its faith in
Wales by giving us the power to deliver the green e c o - nomic s t i mul u s essential to charting fairer and more prosperous future.
Our recovery will be more resilient and more accountable if decisions are taken as closely as possible to our communities.
In every way, this Budget is far more important than the last, and will determine our postpandem ic future. I hope the Chancellor puts livelihoods and fairness before political partisanship and ideology. a