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Caring for a Baby with a Related Disorder

The outlook for a baby with other chromosomal abnormalities or a related disorder such as partial trisomy or mosaicism may be much more hopeful than that of a baby with the full trisomy 13 or 18 depending on the precise nature of the defect, and the professional opinion of a clinical geneticist must be sought.

‘Frequency of occurrence, gaps in medical knowledge, and the lifespan of babies combine to invalidate previous statistics.’

Dr John Cary SOFT USA

‘Hannah has partial trisomy 13 and we were given little hope of her survivalin the early days, and we only learned the truth after insisting we saw agenetic consultant. Hannah has had various health problems and hasspecial needs, but we now walk happily to school.’

‘We were told Ayob had trisomy 13 mosaic when my wife was 6 monthspregnant. We are Muslim and although termination was advised we did notconsider it. Ayob needed heart surgery when he was three, and he is now abright six year old in normal schooling, and is healthy apart from beingprone to colds and chest infections.’

‘Katy is nearly 9 years old and she has ring 13. She needs no special nursing, just twenty-four hour attention with her daily functions which are very slow.’

‘Our son Joe has a deletion on one of the long arms of chromosome 13. He has small stature, hearing and visual difficulties, and mental handicap. He is however, a happy, lively and well child.’

‘Jonathan has a rare form of partial trisomy 18, and when he wasdiagnosed the consultant stressed how serious his particular condition was.Jonathan is now 10 years old and he is profoundly handicapped and goes to a special centre on a daily basis. Trying to arrange suitable long termcare in a stimulating and loving residential environment is proving a lengthy process.’

‘We had a pre-natal diagnosis of Mosaic 12 for Heather and the extreme rarity of the condition and the very poor prognosis were devastating. We refused the advice to terminate without further tests, opinions and research. Ultimately after 5 weeks we took the decision to continue the pregnancy. Heather is now 6 years old. She is beautiful to look at and has a bubbly, caring personality. She is doing very well in school and in her own words in her school report “finds nothing hard.” We have moved location since Heather was born and here her history is not known - nor is it apparent in any way.’

‘No day passes without us remembering our good fortune and the support we received from SOFT in allowing ourselves time to reach our decision.’

‘Jenny has a deletion of the short arm of chromosome 18, and she suffered badly from fits and GO reflux. Since she has had the Nissen operation and a gastro tube, she keeps her food and drugs down, and the fits are completely controlled. The operation transformed her, and she now plays with toys, laughs, and is beginning to vocalise.’

‘Michael had holoprosencephaly and lived for 6 months. Throughout his life he was tube fed, and on medication to stop fits and GO reflux. He didn’t sleep much at night, and we had frequent trips to hospital for respite care and illness. At 5 months he was unable to swallow mucus and we had touse a portable suction pump. One of my proudest moments was when I dressed him in a little sailor suit and walked through the hospital to the car park. Lots of people gave me admiring glances as though to say, ‘What a lovely boy.’

‘Tyanne has ring 18, and she is small, has constant ear infections, a squint,and a dislocated hip which they are correcting.’

‘Simon has holoprosencephaly and is 10 years old. He has a shunt, but is a very happy boy despite his disabilities. His speech is clear and mostly relevant and he has global developmental delay, about on par with his sister who is aged 5.’

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