WHAT TO SAY WHEN A CHILD IS BORN WITH A DISABILITY

Have you ever known someone whose child was diagnosed at birth or shortly afterward with a birth defect or disability? Perhaps the child was diagnosed with Down Syndrome or was born blind or visually impaired, or possibly deaf or hard-of-hearing. Perhaps the child was born without an arm or a leg or with a facial defect, or the child was born with cerebral palsy. Perhaps the child was quickly diagnosed with sickle cell disease or a form of dwarfism.

Parents who receive such a diagnosis for their newborn ride an emotional rollercoaster. They can be excited about the baby’s birth and full of love for their new baby yet shocked, scared, and confused about the diagnosis. The first few days after any child’s birth tend to be exhausting for the parents and full of hormonal changes for the new mom—imagine adding an unexpected diagnosis into the mix! The parents can be feeling great joy and overwhelming pain simultaneously.

Sadly, when friends and family don’t know what to say and do in this situation, they can inadvertently add to the parents’ pain. So let me share with you some ideas—both things to say and do and things not to say and do. Let’s start with the latter.

Don’t do these things!

1. During your first visit to see the baby, don’t act as if you are attending a funeral! Acting as if something terrible has happened ignores the fact that a new life has entered the world and a new child entered the family.
2. Don’t argue with the diagnosis. For example, when a child has been born with Down Syndrome, it is not helpful to say, “I think the doctor’s wrong. The baby looks fine to me.” This puts the parent in a position of needing to convince you that the diagnosis is true, and it also gives the impression that you are unwilling to accept the baby just as he or she is, with that diagnosis.
3. Don’t ignore the diagnosis. Avoiding talking about it—possibly even cutting off the parents if they bring it up—again gives the impression that you do not accept the baby just as he or she is. The parents are probably struggling inwardly to accept the baby’s diagnosis; they need your support in doing so.
4. Don’t speak in platitudes. It isn’t helpful to tell the parents, “God must think you are special in order to give you a special child.” The parents probably don’t feel special at that point, and such comments can give the impression you are not understanding the new reality the parents are facing.

Do these things instead!

1. Congratulate the new parents on the blessing of a new baby! Celebrate with them, and bring the baby a gift, just as you would do for any new baby. Let your ‘oohs” and “aahs” be heard as you meet this precious child.
2. Let the parents know that you’ve heard about the disability or birth defect, and ask them how they are doing. Let them know that you are available to talk to, text, or ask for help in the coming days.
3. If you don’t know what to say about what the family is facing, admit it. Say, “I don’t know what to say or how to help, but I love you and your baby.” Offer to learn all you can about the child’s condition so that you can support the parents and baby now and in the future to the best of your ability.
4. If the newborn has medical complications or will need surgery, provide the parents with extra support during the baby’s hospital stay. Offer to take care of other children or even pets. Bring the parents food, cards, encouraging books, and the like at the hospital.
5. Provide extra support to the family when they get home. In the early days, bring meals and offer to watch over the baby and other children sometimes so that the parents can rest. As time goes on, don’t stop supporting the parents. They may be facing a lifetime of challenges—let them know that it would be a blessing to you to be able to help them in any way you can, even doing things like household jobs and errand-running. Keep checking in and offering such things in the future!

A child born with a disability or another serious diagnosis is still a gift from God. The birth provides you with an opportunity to be a blessing to the family. Celebrate the new life with the parents, pray for them, and support them in any way you can. Don’t let fear of saying or doing the wrong thing keep you away; your efforts can make a huge difference in the lives of people you love.