What advice would you share with friends and family members of women whose baby has been diagnosed prenatally with Down syndrome? I hope the following article will help give a different perspective to those who want to support and encourage an expectant mother until her child is born, and to celebrate the birth and infancy of her baby.
There are as many ways to respond to a prenatal diagnosis as there are expectant moms. She has not lost her individuality, and may be showing a different depth of character, a new sense of humor, grumpiness or impatience. She may be dealing with issues in random order, out of sync with those closest to her. Her emotions could be more intense, or she might be at peace with what everyone else sees as a stressful situation.
Friends and family also have different feelings and responses. Some people avoid being in situations where they 'might say the wrong thing.' This can create isolation at a time when a woman most needs nurturing, but she might appreciate having some time to herself. Sometimes the mom of a baby with a diagnosis spends so much time taking care of those who care about her that she gets no comfort for herself.
Some people seem intent on expressing a few honest opinions, no matter how insensitive, as if both the baby and the diagnosis were hypothetical. It's important to remember that what might have been a forgettable conversation before a friend's baby was diagnosed could be completely inappropriate and unforgivable afterward.
Expectant mothers all deserve a break from thinking about being pregnant; if they enjoy a few moments of silly gossip or a chat about fashion, let that be the main topic of conversation. Bring her a pot of flowers or pastry, a CD or chia pet.
Some days she might want to take a vacation from explaining, worrying and wondering; other days she might feel the need to explain, worry, wonder or complain. Over the course of five or ten years, she may be the one supporting and encouraging you more than you support and encourage her. It might be good to remind her that she is a great resource and friend to you, or that you love being silly and laughing with her more than anyone else.
A friend who comforted me most during my son's first year seemed quite at ease with him when we were together, and one day when she picked him up I asked her about it. She told me that the diagnosis was a big shock to her, but as long as he was with us, we might as well enjoy him. I think that if any other friend has said that, I might have been offended. But she had kept her shock and worries from me until that moment, and I was so glad that she had been there for me.
My son was diagnosed at birth, and I did try to get as much information as possible from the sources available at the time. I did not want his diagnosis or my interest in that small part of who he was to take away from his newborn days. I did not want to be robbed of my enjoyment of him as a wonderful new life. When we were alone together and he looked into my eyes with my finger inside his little hand, there was no diagnosis and no worries. He needed what all newborns needed and I was just the person to deliver. This person was, simply, my son.
Most of the information that I requested about Down syndrome was not for moms of newborns. I wanted to know about his potential, and the opportunities he might find growing up. Because my OB/Gyn was raising his own son with DS, I learned that teens and young adults with Down syndrome had jobs, independent living arrangements; and all sorts of recreation, social and vacation opportunities. Being able to look ahead to a better future for him helped me invest more energy in enjoying him as a baby.
My favorite thing to do in community outreach to families of newly diagnosed babies was to tell them, "Put this stuff under your bed until you have time and interest in reading it; I just want you to have the best information available if you do have questions later." And I would hold their babies, enjoy them, and ask the same questions about the delivery and birth that I would if the baby did not have Down syndrome.
I believe that expectant moms whose babies have a prenatal diagnosis should have the same option to 'study up' with mainstream baby books as well as the best information on Down syndrome, and also to take a break from all that to enjoy her pregnancy. She should be able to complain about the discomforts and inconveniences, to joke about everything that is funny, and to be fully included in the sisterhood of pregnant women in her area.
Moms deserve to enjoy that part of bringing a new baby into the world. So often their friends and families are so worried about saying the wrong thing about Down syndrome, they miss the regular baby topics. That can be a painful result of having a baby with a diagnosis -- and has nothing to do with the baby.
It has everything to do with us as adults, dealing with grief reactions in our own ways; or trying to be so sensitive toward the mom in regard to the diagnosis that she doesn't have room to enjoy talking about those little toenails, those beautiful little toes, and everything on up.
Plus there is no space for moms to complain about no sleep, no time to shower, no chance to eat a meal that is still warm; all those lovely complaints we cherish because they include us in the community of motherhood.
A mom expecting a baby who is prenatally diagnosed has to work harder for her right to have her pregnancy go along as it should. At this time, people should be surprising her with silly little booties; or full size baseball gloves in anticipation of a future little leaguer or ballet slippers in case the little girl coming wants to be a dancer. These are not the ways that friends and family usually behave when they are worrying about a baby being born with a diagnosis.
They often want to show their support by sending information specific to the disability, because they are seeing that diagnosis first instead of realizing this baby is a unique little rascal first, and a person with a disability second. Of course, as our babies grow, they force the realization upon us that they are writing their own books - whether they have Down syndrome or not.
If a baby was prenatally diagnosed with blue eyes, and friends and family immediately looked up all information about the disadvantages of having blue eyes to present to the mother during her pregnancy, we would feel that is inappropriate, even though people with blue eyes do have special health care considerations and problems. Even though the pregnant woman might have the patience of a saint, eventually I believe she might give someone a piece of her mind on the matter. I wish we felt that confident after hearing the diagnosis of Down syndrome about our sons and daughters.
When my son was born, I sometimes felt that in addition to dealing with my own feelings and worries, I was taking on the worries of everyone in the family, my friends and neighbors. Of course they did not have much information on DS, and a whole lifetime of misinformation, plus they were dealing with their concerns for my life as well as the life of my son, and his sister, too. For some reason, my sense of the absurd took most of that burden from me - and fortunately I do have one of the funniest families on the planet.
I look back on even their worst misbehavior with a tenderness now, because they were so concerned about my son right from the start. And they fell so completely in love with him, at some point it just didn't matter any more. They just needed time for him to show them who he was and how much he had to offer. Like his sister, he proved to us that no matter what we expected when he was a baby, he surpassed our greatest expectations and become that person who he was meant to be, unique and wonderful.
If you are the friend or family member of a mom whose baby is prenatally diagnosed with Down syndrome, this might be the time to buy that unborn baby some silly little booties, and share the information you have gathered only with one another, until that expectant mom wants to know (if ever). Down syndrome is only a small part of who her son or daughter will be. Wish for a healthy heart and an easy delivery. And remember, there is no such thing as an easy delivery!
Down syndrome adds just a few challenges to the life of an ordinary baby; all our sons and daughters are at risk. We treat all pregnant women with deep regard and affection, because none of us can predict where her children's lives will take them. We need all the strength we have for each one.
Browse at your public library, local bookstore, or online retailer for books about Down Syndrome, like Babies With Down Syndrome: A New Parent's Guide
The 1000 miles of Luca - A father talks briefly about life with his son who has Down syndrome
National Center for Prenatal and Postnatal Down Syndrome Resources
"How to Deliver a Postnatal Diagnosis of Down syndrome" brochure utilizes the professional recommendations for Pediatricians or OB/Gyn in delivering the diagnosis, to share with your providers
Family Guide for Your Down Syndrome Pregnancy
Diagnosis to Delivery: A Pregnant Motherís Guide to Down Syndrome
Keep Abortion Politics Out of the Pro-Information Movement
My Message Was Lost With My Words
Tough Calls on Prenatal Tests - Non-Invasive Screen for Down Syndrome Confuse - or Mislead - Patients
Just Like You - Down Syndrome
Down Syndrome in the 21st Century http://www.youtube.com/watch?v=I13KxRYqoo0&feature=youtu.be
Featuring the wonderful abilities and potential of people with Down syndrome from infancy to adulthood.
Loving a Child With Down Syndrome: Far From the Tree Doesnít Do It Justice
Far From the Tree: Parents, Children and the Search for Identity
A Brand New Baby with Down Syndrome
New Mother - Newly Diagnosed Child
New Prenatal Testing: Are You Ready?
NDSC/DSOAC Information for Parents with a Prenatal Diagnosis
Thoughts from the Middle of the Night
The Columbus Dispatch: A chosen child
After prenatal testing, Short North couple embraces the future
Dear mom with a prenatal Down syndrome diagnosis
10 True Things About the First Year of Parenthood
On Adopting a Kid With Down Syndrome