October 19: Ruthie's life

October 18, 2007 19:46

My only daughter, Ruthie, died two years ago from the after-effects of a broken gastrostomy tube. She was 25 years and six months old.

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October 19: Ruthie's life

letters 88. (photo credit: )

Ruthie's life Sir, - "A completely unpalatable situation" (October 14) is unpalatable not only for the elderly. Judy Siegel-Itzkovich's article brought back some very distressing memories. My only daughter, Ruthie, died two years ago from the after-effects of a broken gastrostomy tube. She was 25 years and six months old. Ruthie had had profound cerebral palsy since birth, which affected her physically and mentally. For all her life she was unable to stand, walk, speak or do anything independently. She spent most of her life in residential institutions, as we were unable to care for her at home. However, we did all we could to enrich her quality of life - frequent home visits, trips to the zoo, the seaside, the countryside. Ruthie responded with pleasure to music, bird-song, outings in her wheelchair, cuddles and stories read to her. One of her great pleasures was feeding - she had no birth defects of the mouth or swallowing-organs and was able to take mashed or blended food offered slowly and carefully by spoon; she enjoyed the taste and texture of the food in her mouth. She could also drink from a bottle, which she held herself. Unfortunately, in the residential home where she otherwise received the best possible care, they were unable to feed her slowly by mouth owing to staff shortages, budgetary constraints, etc., and Ruthie was hospitalized several times with aspiration pneumonia due to food particles inhaled into her lungs. Eventually, I was - reluctantly - persuaded to consent to her being fitted with a gastrostomy tube. This was not entirely successful; several times it became dislodged or pulled out and had to be replaced. In March 2005 I had a phone call at 3 a.m. Ruthie had been rushed to Hillel Yaffe hospital in Hadera with acute peritonitis and septic shock. By the time I got to the hospital, three hours later, she was already undergoing major abdominal surgery. She remained in intensive care for three weeks, on life-support systems and in a medically-induced coma. The diagnosis written in large letters on her card in the ICU was "Acute peritonitis caused by broken gastrostomy tube." The first time I visited her there, the head nurse came up to me and asked, "Why did she need a gastrostomy tube?" Amazingly, she survived and spent the final six months of her life in the intensive nursing (siudi murkav) ward of the geriatric center at Shfar'am, where she received excellent and devoted care until the end. Feeding was again a problem since gastrostomy was no longer possible due to the surgery she had undergone; nor was the nasogastric tube (zonda) a suitable long-term solution, as she kept pulling it out by waving her arms. Eventually I suggested feeding by mouth, and I myself fed Ruthie her first spoonfuls of thickened yoghurt, with the doctor standing by. It was the first time she had taken food by mouth in more than a year. She sampled it with her tongue, then swallowed it perfectly - no problem. From then on, she was fed by mouth with a spoon for the rest of her life. I would like to set up a fund in my daughter's name to raise money for projects to enrich the quality of life of profoundly handicapped children in Israel. If anyone would like to contact me regarding Ruthie, my email is margaret@actcom.co.il ; my phone-number is (04) 6971877. MARGARET HAYON Safed

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