What to say (and not say) to parents of a newborn with Down Syndrome

What to say (and not say) to parents of a newborn with Down Syndrome July 31, 2011

Down syndrome is the most common birth defect in the world, affecting approximately 1 in 750 births.  In the United States, perversely, thanks to prenatal screening and selective abortion, the number of births has decreased even as the medical and psychological understanding has increased:  just as children with Down syndrome are more likely to live long and fulfilling lives, they are less likely to be born.

My oldest son has Down syndrome; my wife and I were not quite 30 when he was born.  One thing I remember well from when he was born was that everyone seemed to say the wrong thing.  It got to the point shortly after his birth that we stopped telling people that Nicolas had Down syndrome, just because we did not want to deal with their pity or misguided advice. (Hand’s down winner:  “He can grow up to be a TV star!”—“Life Goes On”, a series starring a young man with Down syndrome was a popular show at the time.)

All of this came to mind because of something that happened this past week.  Our neighbors are Turkish, and Muradiye’s sister back in Turkey just had a baby girl with Down syndrome.  Knowing about our son (who is now 18) Muradiye asked my wife Gabrielle over to talk to her sister via Skype.  The poor mother is distraught:  no one she knows has any real understanding of Down syndrome, the baby has heart problems (which is common and often correctable via surgery) and won’t nurse, and the neighbors are all coming over to see the “freak show.”  At a distance of 5000 miles there is little my wife can do, but she can be a reassuring voice, and can provide some basic “mom to mom” advice.

And this brings me to the subject of my post:  what can you say, and what should you not say, to parents of a newborn with Down syndrome, or to expecting parents who have learned that their unborn child has Down syndrome?   My first advice would be to say what you would say to any new parents:  congratulations!   If the baby looks like one of his parents, or is really cute, or has a full head of hair, comment on it.  Ask if he/she is awake at all hours of the night, is nursing okay, etc.  Ask about the baptism, christening or bris.  The child is a baby first and foremost and your comments and questions should be grounded in that.

However, do not dance around the fact that the child has Down syndrome.  Avoiding the subject does not protect the parents from the truth:  they know what their child has.  Above all, skip the pitying comments:  how do you think “how terrible” or “this is awful” will make the parents feel about their child?   Instead, ask them about it.  If you are not sure how to approach it, ask them how they found out.    A newborn with Down syndrome often has a number of distinguishing features (referred to as stigmata):  a slightly flattened face, eyes that appear to have an epicanthic fold or are slanted (whence the long ago name of “mongolism”), slightly smaller ears, curved fingers.  These are often enough to make them readily identifiable at birth, but not always.  Learning is always a shock, but sometimes it is handled poorly:  many doctors can be extremely insensitive.  My own son had only secondary stigmata and it was only suspected when he was hospitalized two weeks later with jaundice.  (The doctor on call did not share his concerns, but ordered a genetic screening without our knowledge.  The jerk.  My wife found out at a routine well-baby visit a month after he was born.)   Letting parents talk about this moment can help them work through their own emotions.

Ask about immediate medical concerns.  Children with Down syndrome can have any number of problems, large and small at birth and during the first two years:  jaundice, heart disease (such as a malformed heart or bad valves),  cleft palate, intestinal problems (such as a blocked esophagus or small intestine).  My own son began developing severe ear infections during the first two years.   Offer the same support you would to any parent whose child is sick or needs surgery.   If you can, offer concrete help such as rides or babysitting for older siblings.

Beyond this, follow the parents’ lead.  Some may be anxious to talk, others less so.  And their reactions can differ wildly:  there is no one way or right way to react.  I have met parents who went into mourning for the child they “lost” (i.e., the child of their dreams).  There are also parents (particularly dads) who want to “fix” things.  (I kind of fell into this category, briefly becoming an expert on Down syndrome.)   And there are parents who accept the hand they are dealt and want to move on.

Avoid mindless optimism:  “I’m sure everything will be fine” can sound a little hollow.  It is very hard to make meaningful prognostications:  the spectrum of physical and mental abilities is as broad as it is for “normal” kids.  And please avoid comments about God’s will:  being told that “God meant for you to have this baby”  can sound cruel even if you mean it as a compliment. It sounds as if you are putting the parents on a pedestal (they are better than you since by implication you couldn’t handle it) at the very moment they feel least capable and least sure of God’s providence. As the years go by the parents may want to reflect on theodicy,  but at the moment it is probably overwhelming.

If you have concrete advice or first hand experience, bring it up and offer to share it.  If you know someone in town or at your church with a child with Down syndrome, offer to put them in contact with the parents.   Parents of kids with Down syndrome often belong to support groups, play groups and advocacy organizations, but these remain very much below the radar, so if you can do something to help the parents get plugged in quickly, do so.    However, if your experience is more than 15-20 years old, be cautious about what you share:  the 80’s and 90’s saw a revolution in the understanding and care of kids with Down syndrome and old advice may be badly out of date.   Into the 90’s I heard stories from parents about doctors who told them that their child was going to be a “vegetable” and should be institutionalized.  (Totally wrong and incredibly hurtful.)

Be careful with your language:  “mongoloid” is now an anachronism and not acceptable.   Call it Down syndrome or Trisomy 21 (a technical term referring to the underlying genetic abnormality).   Sometimes you will hear “Down’s syndrome” (with a possessive):  this is also fine.  But don’t couch things in misleading (or politically correct) euphemisms.  One thing my wife and I hated when our son was born were all the euphemisms we heard:  “differently abled” (what exactly will my son be able to do that I can’t?)  “physically challenged” (that’s me when I try to climb mountains, not my new born son).   Very often this language seemed meant to shield the speaker from the reality of our son’s condition rather than to be respectful of our feelings.   However, there are disagreements within the Down syndrome community over what is acceptable.  For instance, my wife and I are perfectly happy describing our son as “mentally retarded” but we know other parents who avoid this term.

If you work in sacramental preparation and are approached by parents of a child with Down syndrome, please remember that children with Down syndrome (or indeed any disability) cannot be denied the sacraments a priori.  I have never heard of a priest refusing to baptise a baby with Down syndrome, but I suppose anything is possible.  (It is worth remembering that the old and now pejorative term “cretin” was a corruption of “christian” and that the Church always recognized the humanity of the mentally retarded.)   Some priests have questioned whether children with Down syndrome can receive communion, but the bishops are firm in teaching that they should unless there is clear evidence that they cannot understand the meaning of the sacrament:

If it is determined that a parishioner who is disabled is not ready to receive the sacrament, great care is to be taken in explaining the reasons for this decision. Cases of doubt should be resolved in favor of the right of the baptized person to receive the sacrament. The existence of a disability is not considered in and of itself as disqualifying a person from receiving the eucharist. (Guidelines for the Celebration of the Sacraments with Persons with Disabilities, USCCB, 1995)

Ultimately, while what you say matters, what is much more important is simply being there and offering your unconditional love and support for the parents and their newborn child.  Like all children, kids with Down syndrome are a challenge and a source of great joy and great heartache.   Accepting them for who they are—newborn children—will make all the difference in the end.

 

 

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