Date published: 30 September 2019 by Jessica Homer
Ali’s 12-week pregnancy scan revealed that one of their twins, Marlowe, was at high risk of having Down’s syndrome and that she had a hole in her heart.
This heart condition made it difficult for Marlowe to feed and breathe at the same time, so she had planned heart surgery at seven months old. A month after the surgery, Marlowe caught flu which damaged her lungs and all of her organs started to shut down.
The family was told that Marlowe wasn’t going to survive. She was on a ventilator to help her breathe. Doctors advised that they should plan to withdraw life support. However, Marlowe started making progress, totally unexpectedly. It took a further six months to wake her up and six months for her to start crawling.
Marlowe was in hospital for 22 months.
Just before she was discharged home, nurses mentioned Rainbow Trust to Claire and Ali. Sibling support was highlighted for Henley, Marlowe’s twin brother, and Faith, Claire’s 13-year-old daughter, who was struggling with revision for her school exams at the time.
The family was introduced to Rainbow Trust and Family Support Worker, Mandy, started supporting them.
“When Mandy takes Henley or Faith out they can chat about their worries and problems and forget a little about their concerns when they play. Henley and Faith adore Mandy”
Faith felt pushed out for a long time while Claire and Ali were looking after Marlowe so Mandy spending one-on-one time with her has made a huge difference to her confidence and self-esteem.
Marlowe has between five and 10 appointments a month so Mandy looks after Henley while Marlowe attends hospital appointments; in that way he doesn’t have to sit through hours of consultations. The situation has made a huge impact on him so Mandy’s dedicated and expert time with him helps Henley to cope better and means a constant friendly presence. Claire said:
“We drifted apart from friends. None of our friends or family knew how to cope with Marlowe’s condition and our situation. Being a parent of a child with special needs and with all these complications can be very isolating. Isolation takes hold and suddenly you don’t have anyone to rely on or if something goes wrong. Having somebody like Mandy is very special. It’s great to have her help and support; she understands what’s going on and gives us practical, hands-on help.”
“We don’t have many people like Mandy in our life. When your life is like this, it’s very reassuring to know that there’s somebody on your side regardless of your situation. Mandy gives us that time to breathe and to focus on each of our children and that is so important to us.”
Each year our Family Support Workers support over 2,500 families with children who have a life-threatening or terminal condition, regardless of diagnosis, and even when there is no diagnosis. This work is only possible thanks to our supporters.
You can sponsor a Family Support Worker like Mandy today and help make every precious moment count for families with a seriously or terminally ill child. Your sponsorship will enable families who have a child with a life-threatening illness to make the most of time together. Sponsor a Family Support Worker here.