My little brother was born to save my life; EXCLUSIVE: CHARLIE, 6, GETS HEALTH ALL-CLEAR IN MEDICAL 'FIRST'.Byline: By ANTONIA HOYLE
YOUNG Charlie Whitaker is showing his little brother Jamie how to go camping.
They've carried their bed sheets into the garden and propped them up with umbrellas. A trench has been dug round the outside with toy diggers and shovels.
Charlie, six, thinks the world of two-year-old Jamie. Because apart from being his baby brother and playmate, he has also saved his life.
Charlie was born with diamond blackfan anaemia anaemia
see anemia. (DBA), a rare blood disorder that was expected to kill him before he reached 30.
His only hope of a cure was a transplant of stem cells from a brother or sister who was a near-perfect match.
Which is why Charlie's parents, Jayson, 35, and Michelle, 33, conceived Jamie through a pioneering genetic screening process.
By selecting an embryo with a perfect tissue match, they ensured Jamie would be a suitable donor - and Britain's first "designer baby".
The transplant was carried out a year ago. It was successful - and Charlie has just been given the all-clear.
"Finally, after years of heartbreak, we can look forward to our family's future," says Michelle, from Palterton, Derbyshire.
This time last year, Charlie was bald and weak after chemotherapy. Today he's never been healthier. He eats everything in sight and has even won a blue belt in taekwondo. "He knows this is because of his baby brother and tells everyone that Jamie saved his life," says Michelle.
It's a story of joy and relief - yet when he was born Jamie was the most talked-about baby in Britain.
Embryonic screening was surrounded with such controversy that it was banned by the Human Fertilisation and Embryology Authority
The HFEA HFEA Brit Human Fertilization and Embryology Authority lifted its ban in July last year, and now several other British couples have had "saviour siblings" - most recently Jodie Fletcher, conceived to save the life of her three-year-old brother Joshua.
"We're friends with the Fletchers and have supported them all the way," says Jayson, a business manager. "We're thrilled that our fight to save our son has paved the way for other couples."
Michelle first realised something was wrong with Charlie six weeks after he was born. "He was pale and listless. He didn't cry and wouldn't eat," she recalls. At 12 weeks he was diagnosed with DBA, which stops his body from producing enough red blood cells. His vital organs could fail - and he also ran a higher risk of developing cancer in adulthood. "We were devastated," says Jayson. "It was supposed to be genetic, but there was no history of the illness in our family."
Charlie needed blood transfusions at Sheffield Children's Hospital Sheffield Children's Hospital, part of and the headquarters of the Sheffield Children's NHS Foundation Trust is a purpose-built children's hospital. It provides the A&E service for all minors in Sheffield and some further afield. every three weeks. Five nights a week, he had to have a blood infusion injected into his stomach for 12 hours.
"It was awful," says Michelle. "Charlie would hide under the table and curl himself into a ball to try and avoid having the injections. He'd have nightmares about needles. We tried to make it less scary by calling the infusions 'Billy blood' or 'jungle juice', but he was still terrified ter·ri·fy
tr.v. ter·ri·fied, ter·ri·fy·ing, ter·ri·fies
1. To fill with terror; make deeply afraid. See Synonyms at frighten.
2. To menace or threaten; intimidate. .
"It broke my heart that Charlie got tired so easily and had to suffer so much pain. We had to carry around his needles and medicine wherever we went."
The only realistic chance he had of living beyond 30 was a transplant of umbilical blood cells blood cells,
n.pl the formed elements of the blood, including red cells (erythrocytes), white cells (leukocytes), and platelets (thrombocytes).
See erythrocyte and leukocyte. Platelets are classed separately. from a brother or sister. The Whitakers' second child, Emily, now four, was only a 50 per cent match, but shortly after she was born they heard of medical advances in the US that allowed couples to select an embryo to provide a perfect match for a critically ill sibling. "After two years of frantic worrying, we finally allowed ourselves to hope," says Jayson.
But in August 2002 the fertility specialist they saw said the procedure was banned by the HFEA, who deemed it "unlawful" and "unethical" to genetically determine the life of an unborn child.
"We were furious," says Jayson. "We'd always wanted to have four children anyway. What was so wrong with wanting to make sure our third could help the first?"
They contacted the Reproductive Genetics Institute in Chicago, where the world's first "designer baby" was created in 2000. The institute agreed to help, and in October 2002 Michelle started IVF IVF in vitro fertilization.
in vitro fertilization
IVF 1 In vitro fertilization, see there 2. Intravascular fluid treatment in the UK to produce eggs for fertility specialists to screen. "As we got on the plane at the end of the month I was nervous and excited," she says. "The treatment cost pounds 20,000, which we got through fundraising.
"Emily and Charlie came with us. There was a wishing well at the hotel. Charlie threw in five cents and wished that his Mummy would have a baby so he could get better." Doctors took 14 eggs from Michelle. "Every time an egg was retrieved I rang a little bell," says Jayson. "Each one symbolised hope for Charlie."
Nine were fertilised with Jayson's sperm in test tubes and grown into embryos. Two proved a perfect match for Charlie and were implanted in Michelle.
"Waiting to find out if I was pregnant was agonising," she says. Six weeks later she got the news. "Jayson rushed home from work and we clung to each other with joy," she recalls. "As the months passed and my bump grew, Charlie would pat it in wonder. He was longing to get better. But I was terrified Jamie, too, would have DBA. No one knew what the chances were."
He was born by Caesarean on June 16 2003. Jayson says: "It was my 33rd birthday, and as I counted his tiny fingers and toes Fingers and Toes
See also anatomy; body, human; hands.
a birth defect in which one or more fingers or toes are missing.
a digit; a finger or toe. See also measurement. I felt like the happiest man in the world." Jamie's umbilical cord umbilical cord (ŭmbĭl`ĭkəl), cordlike structure about 22 in. (56 cm) long in the pregnant human female, extending from the abdominal wall of the fetus to the placenta. was cut and blood extracted from it and frozen until he got the all-clear from DBA. That would take a year.
"Unlike Charlie, Jamie was a loud, bubbly, thriving baby," says Jayson. "But it was still a horrible time. Now, we weren't just worrying about Charlie - we were worrying about Jamie, too.
"Charlie doted over his little brother. He played with his favourite Thomas the Tank Engine toy with him, and even helped Michelle feed him."
A year later, Jamie got the all-clear. "We were overcome with relief," says Jayson. "But we knew there were tough times ahead."
Charlie went into hospital for his blood transplant in July last year.
First, he was given chemotherapy so his body could accept the transplanted cells. "Watching his hair fall out was horrific," says Michelle. "It confused and frightened him." Blood from Jamie's umbilical cord was then transfused into his body to kick-start it into producing healthy blood cells.
After the two-hour operation he spent a month in isolation in hospital before being discharged.
After that, he had twice weekly checks on his red blood cell count red blood cell count,
n the number of red blood cells (erthrocytes) in 1 mm3 of blood; a useful diagnostic tool in the determination of several kinds of anemia. See also mean corpuscular hemoglobin. , which was steadily rising. He also had to take an anti-rejection drug.
Last October he went back to school for the first time since the transplant. But if any of his classmates had so much as a cold he had to come home - his immune system immune system
Cells, cell products, organs, and structures of the body involved in the detection and destruction of foreign invaders, such as bacteria, viruses, and cancer cells. Immunity is based on the system's ability to launch a defense against such invaders. was too low to risk catching an infection.
This week Jayson and Michelle finally received Charlie's official all- clear. The only medicine he takes now is penicillin, to lower the risk of pneumonia. He has hospital check-ups every two months and his life expectancy Life Expectancy
1. The age until which a person is expected to live.
2. The remaining number of years an individual is expected to live, based on IRS issued life expectancy tables. is normal.
"We went to a play park to cele- brate," says Jayson. "Seeing Charlie and Jamie on the slides together was the best gift I could ever have.
"Jamie's a typical tearaway toddler. When he's old enough to understand we'll tell him how he's saved his big brother's life.
Charlie's nightmares have stopped now. "His hair's grown back too," adds Jayson. "He loves it so much he won't let us cut it."
Having a "designer baby" hasn't been without risks - but Jayson has no regrets. "At last we're a happy, healthy family," he says. "And it's all because of Jamie."
BLOOD BROTHERS: Jamie, left, and Charlie; Pictures: GLEN MINIKIN min·i·kin
A very small delicate creature.
[Obsolete Dutch minneken, darling, from Middle Dutch, diminutive of minne, love; see men-1 ; SMILES: Charlie bravely coped with chemotherapy before the cell transplant; JOY: Jayson and Michelle with their healthy trio; ON THE MEND: Jamie and Emily visited Charlie in hospital