“What Jamie did for his brother is extra special. I am so proud of both of them and I would do it all over again.”
The Whitakers were devastated when Charlie was born with Diamond Blackfan Anaemia (DBA), which prevented his body making red blood cells.
It affects as few as 700 people worldwide and just 125 in Britain. Charlie needed blood transfusions every two weeks and spent days in hospital.
He also endured painful daily injections for eight hours at a time to keep his blood healthy.
His parents were told that the only cure was a stem cell transplant.
But neither of them, nor their daughter Emily, now nine, was a match for Charlie, and despite taking the Human Fertilisation and Embryology Authority through the courts they were refused permission for a “designer baby”.
The Whitakers, of Palterton near Chesterfield, flew to America, where the procedure was legal, to have IVF and select an embryo with the right genetic blueprint.
When Jamie was born in 2003, he was clear of the disease, despite having had a one in 50 chance of suffering it himself, and doctors performed the transplant.
Recalling Charlie’s illness, Mrs Whitaker said: “The worst thing was when it came round for his injections.
“Charlie would say, 'Why are you hurting me, you don’t really love me, please stop hurting me’.
“I still can’t bear to think about it. It’s so hard to hear your child saying that to you.”
Charlie has been monitored constantly since the transplant but a bone marrow biopsy has shown no traces of DBA.
Mrs Whitaker said: “We have been open with both the boys. Jamie knows why he was born but knows we would have loved him whether he was a saviour sibling or not. He is a bit of a miracle and he did a great thing. The boys will always have a bond because of it.”
I know I was born to save Charlie instead of being born just for me: Incredible story of the saviour sibling who sparked an ethical furore
By Angela Levin for MailOnline
Updated: 03:38 GMT, 22 May 2011
Fifteen minutes after the chemotherapy treatment began, Charlie Whitaker, not yet five, started to vomit.
His temperature rocketed and he shivered uncontrollably. He complained of excruciating stomach cramps and pain in his eyes, and suffered continual diarrhoea.
For his parents, Jayson and Michelle, helplessly watching their child suffer in the isolation wing of Sheffield Children’s Hospital, it was both harrowing and terrifying.
Strong bond: Charlie, left, and Jamie last week. Jamie said he 'doesn't feel like a super hero' for saving his brother's life
The chief consultant had compared giving chemotherapy to one so young with ‘pouring poison on a rose garden’.
But the couple had elected, after long and tortured deliberation, for Charlie to have the potentially fatal treatment in an attempt to cure him of a debilitating and dangerous genetic condition.
Now they questioned whether they had made the right decision. ‘Charlie started to scream and said he wanted to come home,’ Michelle remembers.
‘It was agonising to watch him and every time I left his room I couldn’t hold back my tears.
‘When I saw how desperately ill he was from the chemo, I felt I had made the wrong decision and that first day asked the doctors to stop. They told me it was too late but that we were doing the right thing. But I kept asking myself, “Have we done the right thing?” At that stage I had no answer.’
It was a question Michelle was to ask herself time and time again over the next ten days of treatment.
The previous year, 2003, the Whitakers had found themselves at the centre of controversy when it was revealed Michelle had given birth to one of Britain’s first genetic ‘designer’ babies, Jamie, whose stem cells might cure Charlie of his rare form of anaemia.
All smiles now: Michelle with her daughter Emily
Jamie was born after being genetically matched, while still an IVF embryo, to his brother. And just last week, the Whitakers were in the news again when doctors declared Charlie cured.
Talking now, in the spotless kitchen of their large home near Chesterfield, Derbyshire, they admit they could never have imagined being the centre of so much media attention when they met as a young couple in 1989 in a pub in Oxford.
Michelle, 39, a former medical secretary and now a full-time mother, and Jayson, 40, the managing director of a utility company, had married seven years later. They agreed they wanted a family of five so Michelle was thrilled when she became pregnant with Charlie.
However, she started to worry about him soon after the birth. ‘He barely ate, looked so grey and was very floppy,’ she says. ‘The doctor told me I was being an over-anxious first-time mum.
‘But I was so certain something was wrong that when he was 12 weeks old I took him to my office Christmas party at the John Radcliffe Hospital in Oxford – and asked one of the specialists to have a look at him.’
Charlie was admitted to the hospital immediately and tests showed that his haemoglobin, responsible for transporting oxygen around the body, was around one third the level it should have been.
‘His vital organs were shutting down and he could have died in his sleep at any time,’ says Michelle.
Diamond Blackfan Anaemia (DBA), a rare, life-threatening blood condition, was diagnosed. It is caused by a failure within the bone marrow to produce vital red blood cells.
The treatment consisted of blood transfusions every two to three weeks in hospital and agonising injections every night.
Michelle recalls: ‘Charlie hated his transfusions and injections and, when he was three, used to shout, “Why are you hurting me? You don’t really love me.” It was so hard to hear your child say that.
‘We were told that although neither of us were carriers we should consider whether to have more children. The risk was one in 50 that another child would also be affected but we decided to go ahead. Charlie’s sister Emily was born in 2001 and was perfectly healthy.’
However, Charlie became increasingly ill. A bone-marrow transplant was his only hope of a cure but neither his parents nor Emily were a suitable match. If Michelle and Jayson were to try for another child, there was no guarantee that the infant would be either.
However, if they used IVF, the process would result in a number of embryos, thereby increasing the chances of finding a match.
‘We both agreed that embryo selection was the obvious answer,’ says Jayson. ‘Our decision was reinforced by the fact that when couples go through IVF, doctors pick the embryos that have the best chance of survival.
‘We wanted another baby anyway and fixing Charlie’s condition would be the by-product.’
They were aware there was debate over the medical ethics of such procedures but felt that if a healthy child could also save the life of the child they already had, then it was a double blessing.
Having tried a number of fertility experts, Mohammed Taranissi, Britain’s most controversial fertility doctor, was the keenest to help. He agreed to give Michelle treatment to stimulate ovulation, which was successful.
But there was another hurdle. Embryo selection was banned in the UK, so permission had to be sought from the Human Fertilisation and Embryology Authority. The HFEA’s deliberations took an agonisingly long time.
‘They stated that while it was acceptable to test and select embryos to prevent the birth of a baby with a genetic disease, it was not acceptable to select them to help another child.’ (Largely as a result of the Whitaker case, the HFEA has reviewed its policy on ‘pre-implantation genetic diagnosis’ to find tissue matches, now allowing it in certain circumstances.)
Charlie with his saviour brother Jamie at home in Derbyshire
But Michelle and Jayson wouldn’t take no for an answer. Dr Taranissi organised for the family to travel to The Reproductive Genetics Institute in Chicago. He paid for all their medical treatment both in the US and UK. To this day the Whitakers have no idea how much it all cost but an informed guess suggests it could have been a six-figure sum.
‘I felt very committed to them and wanted it to be successful,’ Dr Taranissi explains. ‘You cannot put a value on the feeling I had when I later saw Charlie looking so well.’
Timing was crucial. They had a three-week window of opportunity. ‘Charlie couldn’t last beyond three weeks without a transfusion, which for medical and financial reasons was best done in the UK,’ Michelle says.
‘We travelled out in October 2002. Charlie had a blood transfusion on a Friday and we all flew to Chicago the next day. I had my embryos harvested on Monday.
‘Six out of 13 survived more than six days, three were a tissue match for Charlie, two were implanted and we flew home.
‘One of the embryos took and I had a normal pregnancy. I felt very emotional when Jamie was born at Sheffield Teaching Hospital because he was so special.
‘Stem cells were removed from the umbilical cord, frozen and stored. Although Jamie was perfect genetically you can’t diagnose DBA in the womb as it only becomes obvious when the body has to produce its own blood.
‘We waited until we were sure Jamie didn’t have DBA, which took about a year.’
Then the Whitakers had to decide whether to go ahead with the potentially life-saving but inevitably risky transplant.
‘We were told there was a five per cent chance of Charlie dying because of the transplant,’ Michelle recalls with a shudder. ‘Even if he survived, there was no guarantee he would be cured. We agonised over when to have it done.
‘Should we leave the stem cells frozen until Charlie was a young adult so he could decide for himself if and when he wanted a transplant?
‘If we did, there might not be enough cells to help an adult man and he would have to spend his entire childhood dependent on blood transfusions every two to three weeks and nightly injections to stay alive.
‘On the other hand, he was the healthiest he had ever been and we were advised to use the frozen stem cells before he reached five. Jayson and I talked endlessly about it and decided in 2004 to go for it.’
Michelle and Jayson Whitaker hold Jamie, genetically matched to Charlie whilst still an IVF embryo
The first step was to ‘kill off’ Charlie’s bone marrow using chemotherapy. But the procedure can be difficult for an adult to cope with, let alone a four-year-old. It was a traumatic time for the family.
Charlie had to take 15 different medicines to counteract the effects of the chemo. His hair fell out and he was so sick they had to use a nasal gastric tube for his drugs and to keep him hydrated, which he hated.
Then the stem cells from Jamie were implanted, a process doctors hoped would kick start ¬Charlie’s bone marrow to do its job properly.
‘The doctors kept doing blood tests and, after a couple of days, one of them showed us a slide with one new white cell – the bone marrow makes white cells first before the red – and said he thought it was working,’ says Michelle.
‘I shouted “Yeah!” and threw my arms up into the air.’
Charlie left hospital in July. Now, more than seven years after Jamie’s birth, doctors have pronounced his brother cured.
Jamie may be too young to fully understand all the complexities of bioethics and the arguments over ‘saviour siblings’ – the term Michelle and Jayson prefer to ‘designer baby’ – yet his parents have clearly done an excellent job explaining to him what he needs to know.
Like his siblings, he is charming, well-adjusted and articulate.
‘I was three when Mummy and Daddy told me that I had saved my brother’s life,’ he says.
‘I am happy I did it but I don’t really feel like a superhero. I think I feel both good and bad about it but more good than bad. One bad thing is that Charlie nearly died and that’s awful to think about. The other bad thing is that Emily was upset she couldn’t help save him.’
Emily, now nine, nods. ‘I used to ask Mummy and Daddy why I couldn’t help save Charlie’s life and felt really left out,’ she says.
‘They explained that I had princess blood whereas Jamie and Charlie had army blood. And that the soldiers in Jamie’s blood went into Charlie to beat up the soldiers in his blood and that made him better. I was fine then because I don’t want army blood.’
Jamie understands that he was born specially to save Charlie’s life. ‘I know I was born to do that instead of being just born for me,’ he says. ‘It makes me feel close to Charlie even though now he is nearly a teenager he gets grumpy and backchats all the time. I also know Mummy and Daddy want and love me and always wanted a big family.’
Charlie is, understandably, more interested in talking about his Taekwondo black belt test in a couple of weeks than in delving into his past but, polite boy that he is, he indulges me.
‘I don’t remember much about all the treatment. It was so long ago,’ the 12-year-old says. But I do remember the awful tube they put up my nose and down into my stomach that made me sick all the time – and that they kept having to change it.
‘My illness has affected me in several ways. I am a bit of a role model. As a family we meet up once a year with the DBA UK support group and share experiences.
‘I tell other children about marking the doctors who put needles into my arm out of ten and how some of them used to sweat about getting a low mark.
‘Some of them really look up to me. It is OK but sometimes I feel it is a big responsibility. I think I am more adult than other children my age because of what I have been through. When I do team stuff in or out of school, like Scouts, I am always the leader and help the younger ones.
‘Most children don’t come near serious illness. I have and I feel very sorry for people and especially children who are really ill, especially when there isn’t a cure.
‘Sometimes when we go on the annual weekend trip with the support group, a child who came along the previous year doesn’t come back and that is really sad.’
Jamie interrupts. ‘I’ve remembered what upset me most. Red Nose Day reminds me of Charlie. I know that some of the ill children they show on the TV could die and I get upset.’
Emily agrees. ‘It’s why we buy lots of red noses and badges for charity,’ she says. ‘We all feel very lucky and especially lucky that Charlie has survived and is healthy now.’
I don’t think anyone would begrudge them their luck.
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