Having a baby with Down syndrome will ruin your life? Think again. What the statistics say
- Fri Oct 18, 2013 10:30 EST
The recent debate on abortion for anencephaly in Northern Ireland has reopened the wider debate on abortion for fetal disability.
It is worth, in this context, remaking the point that the most common disability for which babies are aborted in the UK is not anencephaly but Down’s syndrome (DS).
This is usually on the basis of the perceived burden that children with DS will impose on families and the belief that the lives of disabled children are somehow not worth living. Is this justified?
Brian Skotko, a clinical fellow in genetics at Children’s Hospital Boston, published a series of three studies in the American Journal of Medical Genetics in 2011 on the impact children with Down’s syndrome have on families (these have been previously covered on the CMF blog here and here and in this submission).\
‘So many American women’ he says, ‘are getting prenatal diagnoses of Down’s syndrome, and asking: “What does this mean for my family? What does this diagnosis mean for my marriage? What impact will it have on my other sons and daughters?”
The results are incredibly revealing.
In his first study , 822 brothers and sisters were asked about their feelings and perceptions toward their sibling with Down’s syndrome (DS).
More than 96% of brothers/sisters who responded to the survey indicated that they had affection toward their sibling with DS; and 94% of older siblings expressed feelings of pride. Less than 10% felt embarrassed, and less than 5% expressed a desire to trade their sibling in for another brother or sister without DS.
Among older siblings, 88% felt that they were better people because of their siblings with DS, and more than 90% planned to remain involved in their sibling’s lives as they became adults. The vast majority of brothers and sisters described their relationship with their sibling with DS as positive and enhancing.
In the second study parents of children with Down’s syndrome (DS) were asked how they felt about their lives. Of the 2,044 respondents, 99% reported that they loved their son or daughter; 97% were proud of them; 79% felt their outlook on life was more positive because of them; 5% felt embarrassed by them; and 4% regretted having them.
The overwhelming majority of parents surveyed reported that they were happy with their decision to have their child with DS and indicated that their sons and daughters were great sources of love and pride.
But the third study was most interesting of all as it explored the self-perceptions of children with Down’s syndrome.
Of 284 people with Down’s syndrome (DS), ages 12 and older who were surveyed, nearly 99% indicated that they were happy with their lives, 97% liked who they were, and 96% liked how they looked.
Nearly 99% people with DS expressed love for their families, and 97% liked their brothers and sisters. A small percentage expressed sadness about their life.
Rebecca Taylor, writing about this research for Life Site News when it was first published in 2011, suggested that doctors should give the news of a Down Syndrome diagnosis with a smile saying, ‘There will be challenges but your child is nearly guaranteed to be a happy adult!’