Martha has spent most of her life in isolation
Struggling to
cope with her baby daughter's life-threatening condition,
Harriet Donington, 39, found strength and solace through
counselling.
Just two months after our daughter, Martha, entered our world in January 2008 she erupted in eczema, her breathing was erratic, she had chronic cradle cap and her hair fell out. Our almost daily trips to our GP had highlighted the possibility of dwarfism, but were not shedding any light on what these symptoms meant. After a few months, and numerous trips to hospital, she was diagnosed with Severe Combined Immunodeficiency (SCID). It meant her immune system was incredibly weak and was effectively attacking her own body.
Once we were at Great Ormond Street Hospital she was diagnosed with Cartilage Hair Hypoplasia - a rare form of short-limbed dwarfism of which SCID is an extreme symptom. A bone marrow transplant was needed to give her any chance of survival, and while we waited for a donor she had to be kept in a sterile environment to protect her weak immune system. After nine weeks in isolation we were sent home with a complex drugs regime and strict house rules - no dog, limited guests and no real contact with the outside world. Being in hospital was a breeze compared to the psychological, physical and emotional stress we had being at home with an incredibly sick child.
It was a nurse at Kingston Hospital who told me about Shooting Star Children's Hospice, Middlesex, in July. They called me three weeks later and I couldn't help bursting into tears. I simply couldn't hide the stress and loneliness I was feeling from the friendly voice offering my family help. That afternoon, the community outreach team visited and we've never looked back. The relief of knowing there were qualified nurses looking after Martha allowed me precious free time, and I used it to take advantage of Shooting Star's counselling service. When you're going through something that's so life changing, being able to discuss your innermost thoughts is incredibly helpful.
In August, when Martha was eight months old, Great Ormond Street told us the good news that a suitable donor had been found. So, after a daunting three months in hospital we were able to take all minuscule 8lb of her home. However, the relief of being back home was soon overshadowed by the overwhelming care and drugs schedules we had to follow. But again, Shooting Star helped us. As Martha got better she was able to go to the hospice for breaks, which she adored. After spending most of her life in isolation she was finally able to mix with other children.
In December, Shooting Star told us Martha was well enough to
come off its books. I used the counselling service throughout the
time we were under their care and the strength and support gained
from these sessions helped our family enormously.
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Comments:
"I have been a volunteer fundraisier for Shooting Star Childrens Hospice for just a couple of years, I have never visited the Hospice but I am thrilled that Candis has taken these Childrens Hospices on board, when I read stories like these I then know what both Candis and I are doing is so so worthwhile."
Gail Petipher - Thursday 26th Aug 2010