Telling people your unborn baby has Down syndrome

September 13, 2012 in Friends and Family


A decision to share the news can be a difficult one for some expectant parents. Some tell without a plan, while others craft their message. Did you decide to tell loved ones? How did you share the news? When did you tell, and what did you say? What the reaction positive? What do you wish you had done differently? If you have a group e-mail, please share it with other expectant moms.  DownSyndromePregnancy.org has a sample e-mail for you to copy and edit to suit your circumstances and personal reflections.

Update: We also have a booklet for your loved ones. You can download if for free or order a copy from Woodbine House.

Download here: http://downsyndromepregnancy.org/wp-content/uploads/2012/02/DSP-Loved-Ones-booklet-Ver2-20120220.pdf

Purchase a paper copy here: http://woodbinehouse.com/diagnosis_to_delivery.asp

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22 Responses

  1. Mandy says:

    We told our close family members in person or on the phone almost right away. We were still in the stage of grieving and wondering what it would mean, and our family was very supportive. They cried with us when we needed to cry, and they pledged to stand beside us and love our baby all the more. What’s more difficult for my husband and me is deciding how to tell people in our extended circles that we’re not as close to, such as co-workers, acquaintances, and some of our friends. Do we wait until the baby is born, or do we tell people now? We’ve held off on some of these extended groups, because we don’t want people to be saying “I’m sorry” or “that’s too bad” to us all the time. We’re now rejoicing and excited about the upcoming birth of our baby, and it would be hard to have people making unintentional negative comments. I’d be curious to know how other families have handled these situations!

  2. nancy says:

    I told everyone and anyone, well before I really had time to adjust. The question of whether someone knew would cause me so much anxiety that I would blurt out the news awkwardly, and ramble that it was a girl and the name that we’d picked out. I was so nervous about potential comments that I thought personalizing her would act as a shield. If I could do it again I would send a group e-mail, with careful thought about what I wanted to say and the tone.

  3. zerodtkjoe says:

    Thanks for the info

  4. Heather says:

    We told family and close friends by phone and their support was awesome and very much appreciated. Everyone else heard by word of mouth. We sent out our birth announcements with no mention of DS. In our first Christmas letter after our daughter was born we let people know how much fun we had at the national DS conference that year. Got a few Christmas cards back saying “What? You didn’t tell us!?”. That’s the point…I didn’t tell you because you didn’t need to know. Just celebrate my child as the beloved addition to our family. I’ll take care of the rest.

  5. Angel Dockendorf says:

    If I were to do it again, I’d send out an email. It was very hard to tell people on the phone. I was crying and they didn’t know what to say. I ended up making my husband do most of the phone calls and it was very stressful for him.
    I think the people who want to talk to you will call. And they’ll have time to process it and gather their words.

  6. Melissa says:

    When we received a higher risk on a quad screen (1 in 227), we told only our parents and siblings. When two ultrasounds showed no soft markers our doctor told us to stop worrying so we did not share our risk with anyone else.

    After we received Rowenna’s diagnosis at birth, a nurse told us that people will react the way we react. We had a strong need to share our story in our own words, not let the news spread slowly by other people. We told our parents and siblings in person and by phone the day we found out. Then we had birth announcements printed with a beautiful picture of our daughter and enclosed a letter describing her diagnosis. We emphasized that we wanted people to ask questions and to not let it be “the elephant in the room” so to speak, and talked about how we loved her, how she was beautiful, and how we looked forward to everyone meeting her. We sent that out 5 weeks after she was born.

    We have received nothing but positive feedback. Recipients have said that now they know what to say instead of worrying if they should say anything at all. They see her as Rowenna first, not as a baby with Down syndrome. It has opened a lot of paths of communication for us.

  7. Missy says:

    I told everyone via e-mail! I wanted to control the message, didn’t want anyone gossiping, and didn’t want any “I’m sorry.” I did pretty well – I only had one person say I’m sorry to me, and she hadn’t gotten my e-mail. I think it is better to send to more people than you think you need to. At first it wore me out to tell people.

    Here is what I sent (and I’m still proud of everything I wrote, and believe every word of it was accurate!):

    Dear Everybody,

    As you know, Baby Violette Hope showed up on Tuesday, June 26 at about 2:15 in the morning. She is sweet and wonderful and beautiful and a blessing and she has Down syndrome.

    I had quite a few prenatal screens and feel very confident that her body parts are all in good shape. Any of the typical physical characteristics that can cause problems for babies with Down syndrome aren’t showing up – her tone is excellent, her heart is good, her suck is good, her ears are good, etc. etc. The doctor we met with this morning told us that her good muscle tone is one of the only early indicators that they have about the severity of impact the Down syndrome will have on her, and that she looks terrific to him.

    I had many preconceived notions of what Down syndrome was all about, and from what I’ve learned this week, I was wrong about quite a few things and was putting some limits on Violet that don’t need to be there. There are a lot of early interventions that have led many people with Down syndrome to have very full lives, that include independent living, working, even secondary education.

    From everything my husband and I have been told, the best thing for us to do is welcome her as a part of our family and treat her like we did our other beautiful babies. That’s pretty easy. We are very joyous to have her as part of our lives.

    I plan on continuing working and doing what I’ve been doing here at XXXX – and everyone I’ve talked to in the medical community seems to see no reason at all to change that plan. She’s even been given the green light so far to come with me (and my mother) to Las Vegas when I visit the XXX tradeshow in September!

    We have high hopes that she will lead a full and wonderful life.

    My husband and I really appreciate everyone’s support and good wishes!

    Missy

  8. Shannon says:

    We told people over the phone and in person. Other people heard by word of mouth. I am thinking we just told the major people in our lives and they shared with everyone else that needed to know. Everyone was very supportive and helpful. I think at work, people were a little shocked. Nobody was ever unkind, though.

  9. Karyn says:

    We told people as soon as we knew. The first thing we found was her heart condition so we told people about that. Then we found out that her heart condition was a strong indicator of DS. So we told people that.

    We did some research on DS because we didn’t know anything really. It did more to scare us than help so we stopped looking and figured we would deal with whatever happened.

    After her birth we contacted everyone to tell them she was ok (they expected her to be very sick from her heart) and to tell them that she did in fact have DS. We got a lot of different reactions. Most good, a couple of shockers. People didn’t know what to say. We didn’t know either so we took a positive line and people followed our lead.

    Five years down the track we are still positive and people are still following our lead. She is a wonderful, beautiful, energetic, inquisitive nearly 5 year old who continues to charm everyone including her parents and siblings.

  10. Maggie says:

    Everyone close to us knew there was something going on and that we’d had an amnio, but we’d said we might not have results for 2 weeks so no one bugged us. Turns out the FISH test results came back in 24 hrs, positive for DS. I immediately told a local best friend, and a friend who’s an MD (to get info from him) but we decided not to tell anyone else til we’d dealt with the news ourselves. I’ll be honest, we were devastated. I was so scared for my daughter’s health (although really she looked fine in utero – it was just fear), and I was in so much shock.
    It was easy to keep it to ourselves – all of our family lives far away. They are also overly dramatic and I wanted to be able to tell them when *I* wasn’t crying and I wanted to be positive with them. We waited maybe a week. I told them the news, told them we were excited to have this baby, and that we’d follow her closely during the pregnancy to keep an eye on her health. Most people were surprised, my mother made it all about her (as she always does – hence the waiting til I was ready LOL), but it was fine. At work we’re all really close, and I told them all in person. That was tougher than the phone.

    I believe people follow your lead – that’s been our experience. We have friends/family who we feel comfortable confiding in and getting support from when we need, but for the most part I just didn’t want anyone feeling sorry for us. Anyone who’s met Emlyn today knows what a joy she is, and no one questions her awesomeness now :)
    Because we knew ahead of time, her birth was purely a joyous occasion. Got a few “does she really have it” questions but mostly we all just celebrated her arrival!

  11. Patti says:

    We shared Lily’s diagnosis through an email, and a link to my blog. I think it helped people to read our journey, and to see that we were really okay, in spite of the shock of ds. We have been overwhelmed by the love that has flowed to our family since Lily’s birth.

  12. Sherri says:

    We refused amnio at 20 weeks and had a diagnosis 5 days after our daughter was born. Our OB/GYN gave us great advice “The people you tell will take your lead on how to respond” and he was right. All the upset in the world wouldn’t change her diagnosis so we held her, loved, her and welcomed her to the world and everyone else took our lead.

  13. Meggie says:

    When we got our daughter’s diagnosis I was working in our town as a Realtor and had two children in elementary school. I decided (with my husband’s ok) to tell some people at work and my best friends. Because we found out that we were having a girl, we also let people know that her name was Brigid. Knowing that people would ask how I was doing (out of love/concern/community) I asked those people to feel free to share the information. In my situation, when I see so many people during the course of a day/week, I didn’t want to have to tell the story over and over, but I wanted people to know. Offering Brigid’s name as the last part of the “telling” enabled people to shift gears if they wanted to. Only one person ever said they were sorry, but it was from a place of love, not ignorance.

    When Brigid was born (2 weeks early with non-DS complications) we started a blog to keep everyone informed and so that I could rest and not answer a million phone calls.

    Honestly, the hardest part was with my mom, who lives on the opposite coast. She kept telling me that she was praying that Brigid didn’t have DS. I finally had to ask her NOT to say that to me anymore. That I would happily embrace a daughter without DS, but that I had to adjust to my new journey without looking back everytime my mom phoned.

  14. Gwen Smith says:

    We had an inkling prior to delivery, due to blood work and ultrasounds. But at 34 weeks I was put on hospital bed rest due to my little one’s intrauterine growth retardation (IUGR, which happens in some babies, including those w/DS). And so people were very glad to know the baby was here and safe.

    After I delivered and the pediatrician said that she thought Henry had DS, and meanwhile I had some delivery complications, my husband took over in the communication department. DH sent an e-mail to many people. It is attached below and received only positive responses. Two years later, I am grateful that we took a positive, yet informative, perspective from the beginning. Henry is a joy.

    Folks,
    We have been blessed by the birth of Henry Samuel Smith this week, and we have also been blessed by the prayers, love, and encouragement from all of you.

    Henry is a special boy – and he did great in the hospital , born 4 weeks ahead of time! He was a favorite in the nursery – all the nurses really took a liking to him and are really going to miss him! Big sister Isabella hates to part with him, and always wants to hold him and sing songs to him! Emma, our two-year-old is just fascinated with him, and last night said “I love you so much ‘Henny’!’

    We know that Henry is extra special, and the doctors agree – they believe that he may have an extra chromosome (chromosome 21). This means that he has Down Syndrome. Since early on in the pregnancy, Gwen and I have known that there was a very strong probability that this would be the case. Although we have yet to get the formal results, MCV & Memorial Regional pediatric specialists believe this to be true, and we agree, as we can certainly see these signs as well.

    So what does this mean? Well, it really just means that he is unique, just like all of us are. It also means that as time goes on, he may have some special needs that are unique to his situation. He shows some, but not all of the signs of Down Syndrome. We are very relieved that a pediatric cardiologist gave little Henry some extensive testing this week and has said that his heart is perfect!! This is a blessing, because many children with Down Syndrome are born with many heart issues. We will know soon the results of genetic testing, and as time goes on, we will get an idea on how to best meet the needs of this little guy.

    God has blessed us with this gift of this sweet baby boy, and has brought him into our family. The Lord has made him unique, Henry is a blessing to us, and we hope to be a blessing to him. We are so excited, and we thank you for your love and support!

    Enjoy the pictures, attached!

  15. Shannon says:

    I sent this email to my coworkers (I’m a teacher) and friends. We received a birth diagnosis. It was quite a shock, and I had to take some time to grieve before I was ready to tell the world and be able to talk about it. I sent the email below when my baby was 6 wks old. It felt so good to share this news and allow people to offer their support. The responses of others were much more positive and supportive than I imagined they would be.

    Dear Friends/Family,
    As you all probably know, our family was blessed with a beautiful baby boy on 12/30/10. Baby Will—as his siblings refer to him—is a snuggly little guy who is both healthy and sleeping through the night J. The last six weeks has most definitely been a journey for Chris and I, as we learned shortly after Will’s birth that he has Down syndrome. For a short time, we grieved for the child we thought we would have. But we soon realized that Will is not a burden, but a blessing we have received. God has made him a very special baby and has chosen us to be his parents. We feel humbled, honored, and blessed to have him as part of our family.
    We have had many doctors appointments with specialists at Riley Hospital and are happy to announce that he is extremely healthy and thriving. He does have a small heart defect, but the doctor doesn’t feel that surgery will be necessary—as it should close as he grows. His doctors have been impressed with his appetite, growth, strength, and tone—as well as the fact that he does not display the typical health problems that are sometimes associated with Down syndrome.
    We know that we have a journey ahead of us in the upcoming months and years, but we also know that we are surrounded by loving and supportive friends and family who will be there for us in case we stumble. So please, keep our little family and our little “blessing,” Will, in your thoughts and prayers.
    Shannon

  16. Santa Carey says:

    I did not have a confirmed diagnosis until my son was born. I was okay with dx but had a difficult time telling people. When I did, whether it be their reaction or just having to say the words aloud, it was difficult. I truly was happy my son arrived and wanted everyone to know we were happy. I searched the web trying to find the right words to put it in the birth announcement. I came up with the following(see below) I found so many people, just didn’t know what to say and when they knew we were excited/happy about his birth they chimed in with the typical comments you would give an infant, he looks like…, he has dad’s nose,congratulations vs the tears and I am so sorry.
    The birth announcement read:
    A wonderful gift,
    so precious and sweet.
    Our hearts are full,
    our lives complete. Introducing…
    xxxxxx xxxxxx xxxxx
    May x, 2006
    7 pounds, 13 ounces
    19 ¾ inches

    Our beautiful son who fills our hearts with love and joy happens to have Down syndrome (Trisomy 21). xxxxxx has blessed our lives already and makes us smile everyday. We are so proud and excited over our new son/baby brother. We hope you will feel as we do and embrace your newest family member and friend,
    our baby xxx.

    xxxxx, xxxxx, xxxxxx & xxxx

    For those parents who wish to tell everyone after the birth, this is a great way! It was wonderful for us

  17. Lisa says:

    There are a few posts on our blog for those with a new Ds diagnosis. Here’s one:
    http://bridgets-light.blogspot.com/2010/10/new-baby-diagnosed-with-down-syndrome_30.html#comments

  18. Amy P says:

    We told our family and friends in person (not electronically). The news came along with the fact that the baby would be born with a serious heart defect. Because that was immediate and scary to us, we kind of focused on that. It took until close to his birth to determine that he would not need surgery in his first week. Later I realized the blessing it was to have been able to tell everyone in advance, because then when he was born we just had the usual conversations with everyone, “The baby is here! He’s 7 lbs 4 oz and he and mommy are both doing fine,” to which people could reply in the usual way, “Congratulations!”

  19. Don says:

    We didn’t know until Kira was born. We were shocked. We were afraid. We were emotional & clue-less.
    But SOON after the questions & prayers, we would focus on being parents! Let me just say that being the father of a girl with DS has incredibly influenced and transformed my life into GREAT PASSION! All the things I was worried about (her health, her future, etc.) became tiny specs of concern when we first made eye contact! Looking back, I feel a bit “foolish” for my feelings at the time we got the news. Now, I realize it really doesn’t even matter. :-)

  20. I wrote every one of our family and friends a poem:

    Isaac Josiah Combs
    We love you just the way you are

    The night Isaac was born, stars sparkled the sky
    Our lives would change, and here’s the reason why

    “Down Syndrome” they whispered, Shortly after his birth
    Two words that portrayed A false image of his worth

    You see, Isaac is different, far better than planned
    For our son was born with a line across his hand

    He carries one extra chromosome that the rest of us miss
    And ten chubby fingers & toes we all kiss

    No matter the voice used, Two words can never describe
    The fullness Isaac has added To all of our lives

    He is one of the children So special and few
    That came here to learn The same lessons as you

    That love is acceptance It must come from the heart
    We all have the same purpose Though not the same start

    They’ll be many things that Isaac can do, They’ll be things that he can not

    Please remember he’s more than the syndrome he’s got

    Facebook fan page: “Eye on Isaac (Genetically Enhanced w/ Down Syndrome)”

  21. Zoe Rawlings says:

    We were absolutely devastated when shortly after his birth our son was diagnosed as having Down’s Syndrome. In the years that have followed I have never been more ashamed of anything in my life, than of the way I felt then. Those first few traumatic months turned into such joy. Our boy is our world, a true joy. I so wished I had known then and celebrated his wonderful arrival. Open the Champagne as you would any other birth, you will soon come to realise why.

  22. Zoe Rawlings says:

    Also meant to say, a great bit of advice I had early on was very very true, people will take your lead when you tell them about your new baby’s condition. Be solemn and they will be solemn. Be joyful and they will be joyful. Even if you are in those early days of despair, introducing your wonderful new child in a positive way will mean you receive positivity and that is what will make things feel ok. Just try, I promise it works.

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