Emma West and Mark Rowe have faced every parent's nightmare twice over. When their first baby, Megan, was born in July 2007 she was immediately taken to intensive care suffering from a rare chromosome disorder called DiGeorge syndrome. The condition, which causes complex heart problems, meant that Megan spent just a handful of days in her 13-month life out of hospital and at home with her parents.
Then Emma found she was pregnant again.
As Megan underwent three major operations to rebuild her heart, Emma and Mark were rarely away from her bedside at Southampton General Hospital. They were unable to work and lived with the constant fear of their daughter's death. Megan was in pain, hooked up to an oxygen machine and would have "blue episodes" where her breathing would suddenly stop and she'd require resuscitation.
It was during these stressful months that Emma and Mark were introduced to Steve Boss, a family support worker from the Rainbow Trust Children's Charity – one of three charities being supported in the 2011 Independent Christmas Appeal. Steve was there to support the family emotionally and practically as Megan's condition deteriorated and her parents prepared themselves for the worst. Megan went through surgery in a final attempt to save her life, but on 19 August 2008 she died. Steve was with Emma and Mark as their daughter passed away.
"Steve helped us a lot, didn't you mate?" Mark says to him. Sitting on the sofa in the couple's flat, Steve looks very at home. "I hope I did, yes," he replies. During Megan's illness Steve was invaluable as someone the couple could lean on emotionally, for practical help driving them to and from the hospital, and as an additional pair of ears during complicated medical consultations.
"Steve would come in and see the doctor with us. Doctors speak so quickly it's hard to understand sometimes. Medical language can be very confusing. You think you've understood but then leave the room and it's gone. Steve would always help explain afterwards," Mark says. Emma adds: "When Megan was on three kinds of machines for her heart and I had not a clue what they were doing, Steve asked the questions for me."
Steve's support didn't end after Megan's death. In the subsequent years he was around to provide bereavement counselling as they grieved for their daughter, to drive them to her grave and to share memories of her with them. During this painful time Emma suffered two miscarriages before having a successful pregnancy.
But then she and Mark found out at a 20-week prenatal scan that the new baby had the same condition.
Emma has now discovered that she suffers mildly from DiGeorge herself, which means there is a 50/50 chance any child born to her will be affected.
When Lewis was born in July 2010, a day shy of Megan's birthday, doctors found the DiGeorge wasn't nearly as bad as his sister's had been. Nevertheless Lewis had major heart surgery at just eight weeks old and now, aged 17 months, has undergone many operations that have left him, although a happy baby and at home, with some delayed development and still attached to an oxygen machine.
Lewis is a happy little character who gurgles and flaps his arms like any other baby, but his parents are painfully aware of his weak lungs, upcoming surgery and the high risk of infection. Steve is still there to support them.
The Rowes are just one of around 1,170 families across England receiving emotional and practical help from Rainbow Trust. The charity, which receives just 5 per cent of its funding from the Government, currently can only support 10 per cent of the families that desperately need its help.
Appeal partners: Who we're supporting
Save the Children
Save the Children works in 120 countries, including the UK. They save children's lives, fight for their rights and help them fulfil their potential. Save the Children's vital work reaches more than 8 million children each year - keeping them alive, getting them into school and protecting them from harm. www.savethechildren.org.uk
The Children's Society
The Children's Society provides vital support to vulnerable children and young people in England, including those who have run away from home. Many have experienced neglect, isolation or abuse, and all they want is a safe and happy home. Their project staff provide essential support to desperate children who have no-one else to turn to.
Rainbow Trust Children's Charity
Rainbow Trust Children's Charity provides emotional and practical support for families who have a child with a life threatening or terminal illness. For families living with a child who is going to die, Rainbow Trust is the support they wished they never had to turn to, but struggle to cope without.
At The Independent we believe that these organisations can make a big difference to changing many children's lives.
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