On having a brother or sister with Down syndrome

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.