Baby engineered to save brother
A couple who genetically engineered their baby to be a bone-marrow donor for one of their other five children have prompted renewed debate about designer offspring.
Olivia, 39, and Andrew Densley, 49, from Melbourne, spent A$100,000 (NZ$110,000) on successive IVF treatments before obtaining the perfect embryo to save their fifth child Fletcher, aged 4, who suffers from the potentially deadly illness Wiskott-Aldrich syndrome.
The condition turns off the body’s immune system and reduces its ability to form blood clots, causing dangerous bleeding. As the condition is primarily a disorder of the blood-forming tissues, stem cell or bone marrow transplants offer the only hope of cure.
After a fruitless worldwide search for a compatible bone marrow donor who could save their son, whose condition was deteriorating, the couple decided to create their own donor child using IVF and their most recent addition, Lilliahna, a girl, was born last week.
The Densleys’ story has been compared to Jodi Picoult’s bestselling novel My Sister’s Keeper, adapted into a Hollywood film, centring on the struggles of 13-year-old Anna Fitzgerald, who sues her parents for medical emancipation when she discovers she was created as a ‘‘saviour sibling’’ for her sister Kate, who has leukaemia. Anna refuses to donate her kidney because she fears the loss will affect her own future.
The life-saving bone marrow that Fletcher needs will be extracted from his baby sister’s hip after her weight passes 10kg.
When asked on Australia’s 60 Minutes television programme whether she feared Lilliahna might one day resent having been created to save her older sibling, Olivia Densley said: ‘‘I feel like we can positively say to this child, ‘Yes we did have you for some of your bone marrow, but it’s a good thing because we knew you were going to be OK’.’’
The couple have faced stinging criticism on social media, not only for creating a donor baby but also for continuing to have more children when they already knew that Olivia Densley was a carrier of Wiskott-Aldrich syndrome.
An older child, Cooper, now 7, had the disease diagnosed but was saved when another of the Densleys’ children, Jackson, proved the exact match for the bone marrow transplant he needed.
For a woman who carries Wiskott-Aldrich syndrome, there is a 50 per cent chance that her son will suffer from the disorder.
When the couple were asked why they had a fifth child when they knew the risks, Olivia Densley said: ‘‘We just optimistically, positively thought this would not happen again.’’
Three weeks after his birth in 2014, the couple learnt that he also had the disease. As his condition worsened and with their desperate international donor search failing, they turned to IVF to create Lilliahna.
Viewers accused the couple of selfishness for bringing a child into the world for the sole purpose of providing a bone marrow transplant.
The IVF specialist who worked with the couple, Gareth Weston, said the consequences for the family of failing to find a bone marrow donor for Fletcher ‘‘was the loss of their child’’. He said he did not think the couple had their new baby simply to save Fletcher’s life. – The Times