I recently met the most amazing women. I was speaking at a conference, and four women were speaking after me-I'm so glad I didn't have to follow them on the podium, for they were truly an impossible act to follow. These women were the mothers of children with Down syndrome, and they were there to help perinatal nurses better understand how to help mothers when they give birth to their precious babies. Some of these women knew months before they gave birth that their babies would have trisomy 21, some found out immediately postbirth, and some not until they reached the postpartum unit, but none of them had positive experiences with nurses and physicians when they learned about the baby. I'm writing this editorial to share some of their wisdom with all of you. How do you handle it when the amniocentesis results indicate trisomy 21? If you are with the patient when the diagnosis is given, how do you react? What words do you use? What happens when you're the nurse in the room during a birth when an undiagnosed Down syndrome baby is born? Does the room become silent? Is the mother congratulated on giving birth to her child? How about postpartum, and the baby is brought to her, or even worse, not brought to her, before the diagnosis has been confirmed and explained? All of the mothers at the conference described situations they lived through when all the wrong choices were made by the doctors and nurses who cared for them, leaving memories they will never forget, memories of the birth of their child being sad and upsetting rather than joyous and celebratory. These mothers did not want to scold nurses for what had happened; they merely wanted to point out how the discussions could have been accomplished in a more thoughtful manner and how they wished they had been treated. In response to their experiences, these mothers formed a support group, "Down Syndrome Long Island," through which they provide advice, support, and information for parents of children with Down syndrome and for physicians and nurses.
I refer all of you to their Web site http://www.dscli.org/ where you can find a great deal of helpful information. Here are some of the suggestions they offer on their Web site, as well as some of the things they said in their presentation which I found particularly important:
* The birth of a baby is a precious moment. Be sure to congratulate the mother on the birth of her child.
* The mother should be offered a private room.
* Be sure that both parents are present when the news is given about the baby's diagnosis.
* The mother's obstetrician or midwife should speak with the parents first and should do it as soon as possible after the diagnosis is made.
* If immediate medical intervention is not needed for the baby, the baby should be present with the parents when the news is given.
* Refer to the baby by name.
* Examine the baby in front of the parents, explaining and answering all their questions. Do not concentrate on the Down syndrome in your physical assessment; this baby still has all the needs of babies without Down syndrome.
* Do not make projections about the child's future.
* Accurate and recent printed information on Down syndrome should be made available to parents.
* A social worker or grief counselor should visit the parents.
* Although they may not yet be ready, offer new parents the opportunity to speak to a parent of a child with Down syndrome.
* Supply parents with referrals to necessary specialists, to early intervention, and to local and/or national organizations.
The audience of nurses at this conference was moved to tears by the stories these parents told. These particular mothers teach us how to deal with difficult news, and how to behave knowing that this baby is a beloved member of a family, not just a diagnosis. They remind us what amazing opportunities we have to impact on families' memories.