Family experiences

Share your story

It is the experience of families that is the most important part of the Better at Home Campaign so we would love to hear from any parent or carer wishing to share their story - to get involved email campaign@wellchild.org.uk with your name and contact number or call Helen on 0845 458 8171.

 

 

Sam's story

Four year old Sam has spent much of his life in hospital with a complex and life-threatening condition which the medical experts are still struggling to diagnose.

 

Sam was born at 37 weeks after a fairly difficult labour. He and his mum Liz were allowed home, but the little boy’s health problems began at just seven days old when he turned purple. The family GP told Liz that Sam probably just had an allergy but her fears that her son had more serious problems were soon confirmed.

 

Three days later Liz couldn’t wake Sam up and he was admitted to hospital and had a lumbar puncture, the first of many medical procedures the little boy was to undergo. At 17 days old he was back in hospital, where he had to have a tube inserted to help him breathe. For the next three months Sam was well, but then he had another setback with his health and the cycle of treatments and hospital stays continued.

 

Later Sam was referred to Great Ormand Street Hospital who have said he might have a diagnosis of ‘atypical central hypoventilation syndrome’ although he does not fit any specific genetic make up so he is still officially undiagnosed. For six months, Sam did not eat, walk or talk and continued to have unconscious episodes.

 

Sam has had ongoing tests and hospital care ever since he was born but with no diagnosis. In February 2009 he had a tube inserted as his tummy does not work properly and he has had to undergo this process seven times in one year. His nervous system also does not function properly and in January 2010 he had specialist testing in Oxford. He is ventilated overnight, loses weight easily when he is particularly sick, sleeps for up to 17 hours a day and is permanently fed by tube. Sam has also contracted MRSA recently and chicken pox which just complicated his condition.

 

The family are now trying to get Sam genetically screened in America where the technology is more advanced. However Liz says the community care the family has received is fantastic and she couldn’t ask for any more. She has overnight carers three times a week and Sam attends preschool with a nurse and also gets time in a hospice.

 

Liz says that the link between community teams and the hospital is absolutely crucial and it is brilliant that WellChild nurses are there to bridge that gap.

 

Sam has spent a lot of his life in hospital but despite this he is doing well and not behind developmentally. He is up and down at times, and he is very aware of the care he needs and what is happening to him. He asks a lot of questions and some days are harder than others.

 

Liz emphasizes how important it is for children to be cared for at home, saying that you can see Sam regress when he spends long periods in hospital.