Long-term support for a family whose little girl has never let her problems get in her way.
Sharon gave birth to her twin daughters, Matilda and Layla, 6 weeks early in 2011. Matilda weighed 4lbs, which would have been enough of a challenge – except that her family had found out, 16 weeks into the pregnancy, that she’d developed an unusual case of spina bifida, so her spine wasn’t developing properly. "Unfortunately, this was only the first of a number of conditions I would learn Matilda was facing," remembers Sharon.
A series of unfolding problems
Matilda was taken to intensive care immediately after her birth and, although she needed help with her breathing, the doctors said she was OK. But she needed surgery, and spent her first 3 months of life recovering in hospital. A number of scans during that time identified further problems: her kidneys were fused together, and she had a range of brain abnormalities.
“The doctors warned us that Matilda could have severe learning difficulties, and could even be both blind and deaf. He told us we’d only know the full extent of these conditions as she got older. So we took her home from hospital with no idea what the future held for us.”
Answers have been hard to come by
Four years on, Matilda’s family still have many unanswered questions. Their little girl still doesn’t have a confirmed diagnosis, so her condition is known as a SWAN (syndrome without a name).
“Matilda has continued to be faced with new complications,” says Sharon. “She recently had intestinal failure, but no one knows why. She also has brittle bones, and hypoglycaemia; we have to be on alert 24/7, because her sugar levels can drop so quickly that she can go into a coma within minutes. She can no longer swallow, and was initially fed through a gastronomy tube but now gets her nutrients intravenously through a line that sits inside her heart, which means she’s at constant risk of infection.”
Matilda’s astonishing progress
Sharon smiles as she points out that nurses who knew her at birth are astounded by the progress Matilda has made. “Despite all of her challenges, Matilda’s personality just shines through. She has a great sense of humour, is a real little Miss Chatterbox, and loves doing whatever any 4-year-old girl does. She doesn’t see her condition as a disability and doesn’t let it get in her way. She has her own Wizzy Bug powered wheelchair for getting around, so she’s pretty independent and can play with her brothers and sisters anywhere.
Coming to our children’s hospice
Sharon explains how the family came to our hospice. “In 2015, we were told that Forget Me Not Children’s Hospice could help us. At first we couldn’t understand why it was being suggested, because Matilda’s condition still isn’t defined as ‘life-shortening’. But after we spoke to their nurse consultant, it all made sense. We understood that the hospice is about long-term support – it’s not just for children who are unlikely to survive.
"Matilda can’t go to school or nursery, and we don’t get support from anywhere else, so having Forget Me Not is great. Matilda goes to Russell House once a week, and she loves it. The facilities are fantastic and it gives her a change of scenery as well as the chance to socialise with other children and the care team. It means I can relax or spend time with my other children, knowing Matilda is happy and being well looked-after.”
Making the most of hydrotherapy
Matilda’s vulnerability to infection means she can’t use ordinary swimming pools or paddling pools – but she can use the hydrotherapy pool
at our hospice. "Because the pool is so well maintained, I can take Matilda in with the help of the care team, and it really helps her joints and muscles,” says Sharon. “We cherish these moments, which are only possible thanks to Forget Me Not Children’s Hospice.”