Sunday, May 18, 2008
Little Jodie Fletcher (2) from Co Down is the UK’s first ‘designer baby’ … a perfect genetic match for big brother Josh who suffers from rare bone marrow condition
They look like any typical brother and sister playing happily together in the back garden of their Ulster home.
But one day so-called designer baby Jodie Fletcher, from Moira in Co Down, could save her brother Josh’s life.
Two-year-old Jodie, who is the first designer baby in the UK, was conceived using a type of IVF treatment which ensured she was the perfect genetic match for her six-year-old brother.
Josh suffers from a rare, incurable genetic condition called Diamond Blackfan Anaemia (DBA) which means his bone marrow doesn’t make red blood cells.
Without a bone marrow transplant, he is at risk of developing leukaemia or bone cancers.
Neither Josh’s parents, Joe and Julie, nor his older brother Adam (9), are a suitable match.
But little Jodie, who was born in July 2005, holds the key to her brother’s cure as cells from her umbilical cord and some of her bone marrow could save his life.
As MPs last week began debating changes to the controversial Human Fertilisation and Embryology Bill, Moira couple Joe and Julie say they will never regret their decision to battle for a ‘saviour sibling’ for their sick son.
There are some vocal critics against the concept of designer babies, and Joe and Julie agree that people are entitled to their opinion.
But Joe is clear: “The only other option is for Josh to die or live the rest of his life with transfusions.
“If he doesn’t have a bone marrow transplant, he will have transfusions for the rest of his life and he will have iron overload.
“He is at a higher risk of leukaemia and bone cancers, and ultimately the iron damage will kill him.
“These people who are saying this is abhorrent or whatever — the option they are giving him is hospital for the rest of life and then death.”
While Josh seems like a perfectly healthy and energetic little boy, he attends hospital every three weeks for a blood transfusion which means he suffers from iron overload which damages the body’s organs.
He now takes tablets to help remove some of the iron, but before that medication was available the iron had to be flushed out of his system.
Julie explained: “We used to have to infuse him every night for 12 hours with needles in his body and lines.
Joe added: “It wasn’t nice at all.
“There was all this screaming and shouting and holding him down and sticking needles in him.” While Josh was undergoing the distressing infusions each night, his parents read about Jayson and Michelle Whitaker, an English couple who had IVF treatment using a screening process called pre-implantation genetic diagnosis (PGD).
VIABLE
With normal IVF, doctors select the embryos which are the most viable, whereas with PGD the embryo which is the closest match to the sick child is implanted in the mother’s womb.
But until Jodie was conceived in October 2004, PGD was illegal in the UK.
“The Whitakers hit the headlines because they realised you could do IVF and get a designer baby,” Julie said.
“Their wee boy had the same condition.
“They were quite big in the news because what they wanted to do was against the law so they had to go to Chicago for the embryo selection.”
But the Whitakers thought if another couple fought the Human Fertilisation and Embryology Authority (HFEA), the rules might be changed.
They put Joe and Julie in touch with leading fertility expert Dr Muhammed Taranissi.
But the devoted mum and dad also prepared themselves for the possibility that their application to the HFEA would be unsuccessful and they re-mortgaged their house thinking they too would have to go to the States.
The HFEA made a groundbreaking decision to change its rules in July 2004.
The couple celebrated when they heard the news, but their battle wasn’t over as permission is granted on a case by case basis.
The HFEA initially wanted the Fletchers to check every bone marrow register around the world for a match for Josh.
Joe said: “”I have nothing but disgust for the HFEA. If you have a bone marrow transplant from a sibling for DBA the odds then are a 95pc chance success rate.
“If you go outside the family it’s 40pc.
“They didn’t mention that of course, but there was no way we were doing it.”
The couple said the HFEA suggested they could have an abortion if they conceived naturally or by ordinary IVF and later found that the unborn baby wasn’t a genetic match.
“They suggested that as an option yet they were the ones saying what we were trying to do was beyond the pale or wrong,” Joe said.
Despite being very similar to regular IVF, some vocal campaigners have condemned PGD as morally wrong. Labour backbencher Geraldine Smyth has described saviour siblings as ‘appalling’, while Josephine Quintavalle of Comment on Reproductive Ethics (CORE) has said: “The concept that a baby should be created with this specific purpose in mind goes beyond the comprehension of compassionate and civilised citizens.”
But when this opinion is raised, Julie points at Jodie and Josh playing with their brother Adam and asks: “How can that be appalling?
“We wanted another baby anyway. We just went that step further when we were having that baby to ensure it was a match.”
Joe added: “People said to me you shouldn’t be doing this, but if the devil had appeared to me in a puff of smoke and said I can get rid of Diamond Blackfan, I would have said where do I sign?
EMBRYOS
“That’s just the stage you get to.
“Josephine Quintavalle has said some stuff about us — never having met us — saying we only want a spare parts baby and that the child should be loved for herself but of course she is.
“They used to trundle out the same spokeswoman every time who was anti what we did and she always went on about the embryos that are lost.
“She is not going to stand up there and say all you tens of thousands who have done IVF, you are all sons of the devil or whatever way you like to put it — which I have had quoted to me.
“It just happened with us that our genetic match, Jodie, was the most viable embryo as well.
Josh is yet to undergo the bone marrow transplant which should give him the all clear from DBA.
Doctors, funded by money raised by charity DBA-UK, are currently working on alternatives.
Josh is soon due to undergo an MRI scan to assess if the iron overload has damaged his body.
Joe said: “We know he has iron overload, but we don’t know if any of his tissues are damaged as a response to that.
“If it turns out that he has any damage to his heart or his liver through the iron, it will not necessarily force us to go for the transplant, but will make it more necessary.
“If he doesn’t have any iron damage to his body, it means we can sit back and let the research go for a couple of years and see what happens.”
Josh is now old enough to understand his condition.
His dad explained: “Josh understands almost everything.
“He wants to have the bone marrow transplant. He wants to be healthy and not to have Diamond Blackfan. He knows that Jodie’s giving him a little bit of her blood to help make him better and he also knows that when it happens he’s goes to be sick for a few weeks and it’s not going to be very good for him.”
TRANSPLANT
If the family decides to proceed with the transplant, they will have to stay in England for six months because of the risks involved.
But despite the decision facing them, they are positive and can joke about how they’ve made history with their designer daughter.
Joe said: “The thing is, there was no designing done at all.
“It’s not like you say I want an IQ of 145, 5’8”, blonde hair and blue eyes.
“At the DBA-UK conference this year there were three babies conceived through IVF/PGD as a direct result of us getting things changed.
“It gives me a nice warm feeling to see them running about because of what we did.”
And Julie adds: “I used to joke because when Jodie was born she had big ears and was baldy, and I used to say do you think I would have designed her like that?
“But she’s grown into her ears now!”
l To donate to research into DBA click www.dba-uk.org
