Saviour sibling

FINAL PROJECT: CMC
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I had a 'saviour sibling' to cure my desperately ill son - but now I've found out my newborn daughter can't save his life
Donna Zammit's first, tearful words to her husband Thomas after their baby daughter was born six weeks ago were: "I did this for Jamie."
Strange words, but then baby Donatella was conceived with the primary intention of her becoming a "savioursibling" to her nine-year-old brother Jamie, who suffers from the rare genetic blood disorder Fanconi anaemia.
Their unbridled optimism that Donatella might provide their son with a bone marrow transplant and in doing so save his life has been cruelly short-lived.
Two weeks ago the Zammits received the devastating phone call from Great Ormond Street hospital in London to say that tests onDonatella's umbilical cord blood had revealed she was not a perfect tissue match for her brother.
She will not save Jamie's life and although Donna and Thomas say they love Donatella just the same, inevitably her birth has been tinged with disappointment.
Mother-of-five Donna, 36, still hasn't broken the devastating news to Jamie, who is already struggling to cope with the physical and emotional effectsof the disease, for fear it will emotionally crush him.
She doesn't regret having Donatella, but in her darker moments she questions the wisdom of raising her son's hopes by telling him, before she fell pregnant, she was going to try for a "saviour sibling".
"The time just never seems to be right to tell him," says Donna, a former advertising PA who lives with Thomas, 33, a shop manager inBromley, Kent.
"The hospital keeps asking me: 'Have you told Jamie yet?' but I don't want to upset him.
"I felt such a failure when we found out that Donatella was not a perfect match, because we'd been so hopeful and quietly optimistic.
"When I first told Jamie I was going to try for a baby to help save his life, his reaction was: 'That's great, mum.'
"He was so sweet and caring when I waspregnant with Donatella and since her birth
"He loves holding his little sister in his arms, stroking her head and kissing her little fingers, and I keep thinking: 'Will he feel the same way about her when he knows she can't help him?'"
And it is this pertinent question which goes to the heart of the controversial ethical debate about "saviour siblings" or, more brutally, "spare part" babies.
To whatextent are Jamie's feelings towards his sister coloured by the knowledge she was conceived in the hope of saving his life? Will he end up resenting her for not being able to do so?
And how will Donatella feel, growing up knowing she might not have existed had her brother not needed a bone marrow transplant?
Will she feel as much a failure as her mother, for failing in this one vital respect,and believe herself to have let down both her parents and her brother?
Doting brother: Jamie has yet to find out his new little sister cannot help him get better
Children diagnosed with Fanconi anaemia, or FA, are generally not expected to survive beyond their teens or early 20s, and if no bone marrow donor is found, will Donatella feel the burden of guilt fall on her small shoulders?
These aretough questions that Donna and Thomas admit have exercised their thoughts daily.
The truth is, they don't know if what they tried to do was right or wrong, they are simply desperate to save Jamie's life.
"I love Donatella as much as my other children. I love her for herself and not for what she might have been able to do for her brother, so while there is a disappointment, I am not disappointedwith her," says Donna.
"I don't know if what I tried to do was right or wrong, but until people have stepped into my shoes and lived with the reality of having a very sick child, they have no right to judge.
"As a mother I feel I have a duty to try to do everything I can to try to save my son's life and I believe any mother in the same situation would feel the same way."
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