On having a brother or sister with Down syndrome

Happy Halloween

Happy Halloween

Today is the last day of National Down Syndrome Awareness Month. And, tonight, my son and daughter will go trick-or-treating for Halloween. What is the effect on siblings of having a brother or sister with Down syndrome?

Not surprisingly, in addition to being concerned about what effect having a child with Down syndrome will have on an expectant mother’s partner, mothers are also concerned about what effect having a child with Down syndrome will have on their other children. This is one of the top concerns listed by women who choose to terminate following a prenatal diagnosis, but it is no doubt also a concern of moms who choose to continue as well. The results of research are surprising.

As part of the same study in which parents were surveyed, Drs. Skotko and Goldstein, and Susan Levine also surveyed hundreds of siblings to find out what their experience had been having a brother or sister with Down syndrome. Here’s what the siblings said:

  • 96% had affection towards their sibling with Down syndrome;
  • 94% were proud of their brother or sister with Down syndrome; and,
  • 88% felt they were better people because of their sibling with Down syndrome.

As with the responses from parents, I doubt you would get this high of a rating if you polled siblings’ feelings about their brothers and sisters who only had 46 chromosomes. But, it’s the last figure that stands out to me. Almost 9-out-of-10 brothers and sisters said they considered themselves better people because of their sibling with Down syndrome–that’s a 90% figure most do not associate with Down syndrome.

I do not see how any expectant couple could foresee, when they receive a prenatal test result for Down syndrome, that their expected child will have such a positive impact on their other children. Instead, the understandable concerns would be that this child with Down syndrome will demand more attention, thereby sacrificing time that may otherwise be devoted to an existing or future child. How can that then result in the other children not feeling slighted, or resentful towards their brother or sister with Down syndrome who “gets all the attention”? But, when siblings are asked, they overwhelmingly say they think they are better people because of, not in spite of, their brother or sister with Down syndrome.

Not an exact corroboration of this effect, but another study, done by the research team that found the lower divorce rate among couples with a child with Down syndrome, reported another surprising result that may be informed by these study results on parents and siblings.

Did you know that you are more likely to have another child when you have a child with Down syndrome?

That, at least, is what the researchers found when surveying all Tennessee families to see what the birth rate was following a child with Down syndrome. The researchers found that while the general population only had another child 28% of the time, where the couple had a child with Down syndrome, they had another child 45.7% of the time–a significant increase.

I think this, too, would seem counter-intuitive. Why are couples who are so concerned when receiving a prenatal diagnosis about the impact of raising a child with Down syndrome on their other child choose to have another child more likely than if they did not have a child with Down syndrome? Particularly when all families are then counseled once they have had a child with Down syndrome that any subsequent pregnancy is considered high-risk, with the typical baseline chance being 1% no matter the age of the mother (though the NSGC guidelines have a more technical recalculation of incident rate for subsequent pregnancies).

No doubt, many of these subsequent reproductive decisions are made to ensure the child with Down syndrome has a family member the parents can (hopefully) rely on to care for their child with Down syndrome once the parents have passed on. But, it seems as though that significantly higher likelihood–going from just over one-quarter to almost 50%–of having a subsequent child may speak to a realization that the parents have once they have welcomed their child with Down syndrome into this world.

Parents report that they overwhelmingly love their child with Down syndrome and have a more positive outlook on life. Perhaps that informs their decision to take another chance on having other children, who then overwhelmingly report that they consider themselves better people because they have a sibling with Down syndrome.

Comments

  1. Jeffrey Kraus says:

    These survey results are probably a result of social pressure to put on a happy face. Reports from normal siblings show resentment of the parents for burdening them with the expectation that they will care for the disabled sibling when the parents are old, see http://www.reddit.com/r/todayilearned/comments/1oyiro/til_that_over_90_of_fetuses_diagnosed_with_downs/

    Expecting normal siblings to care for disabled siblings is harmful to the normal sibling, see http://sophiawong.info/parentification.

    • So, I’m clear on your comment, you’re relying on comments from Reddit as a source of objective fact to support your claims? Regarding the work of Wong, she is considering all disability, when the focus here is on Down syndrome.

    • The positive benefit reflects the truth in how serving others benefits the self.

    • It’s nice to have Kraus back sharing his wisdom in judging others he sees as less worthy than himself. This is the same “normal” person who advocates for killing newborns with a Down syndrome, just so that we’re all clear on his agenda.

  2. H Trammell says:

    In my years associated with families raising a child with a disability, I have seen that the factor influencing the affect on siblings the most is the attitude and actions of the parents. When parents will not reach out for the support they need, when they don’t make an effort to give their other children room to grow and express their feelings, when they are not intentional about communication with their kids, when they can’t bring themselves to express or receive honesty from their families, when they neglect their relationships with their partner/spouse then all family members suffer. I’ve see this across disability, economic, and cultural lines. It has very little to do with the disability or the person with the disability.

  3. Scroll down after clicking this link to read the story of a brother who, along with five friends, organized a Down syndrome awareness event. As he put it, “We six kids got together to help raise awareness and to teach our peers that children with this disability are real people just like us and that they should be treated with respect, kindness and compassion.” Already a better person than I was at that age, and somehow overcoming the burden of being a brother to a sister with Down syndrome. Click here for the story.

Trackbacks

  1. […] who did not have a child with Down syndrome. The other children weren’t raised deprived, but considered themselves better people because of the sibling with Down syndrome. And, not only did the child with Down syndrome do better […]

  2. […] If she had asked about the child’s brothers and sisters, Horan may have learned that they consider themselves better people for having a brother with Down […]

  3. […] lots of research on siblings of people with Down syndrome that argues the diagnosis can create a positive impact on […]

  4. […] is the third in a series of posts about how parents feel about their child with Down syndrome, how siblings feel about their brother or sister, and now, how the individuals with Down syndrome feel about […]

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