Did you receive a prenatal DS diagnosis?

This is a message from Kori Shaw, creator of the Flourish Network for parents:

Right now, I am completing my research for the Down Syndrome Affliates in Action (DSAIA) talk. I’ve been doing a benchmark study on what information and materials women are given when they get a prenatal Down syndrome diagnosis. I’m focused here in the San Francisco Bay Area. I’ve gone to Stanford, etc. There is nothing here! No support, no materials. I’m absolutely astounded.

Would you be able to ask your blog readers about this? Did they receive a prenatal diagnosis? What was their experience? They can contact me through the flourishnetwork.org site, or you can share my email: kori@flourishnetwork.org. Thanks!

I remember several years ago, when my book was just an idea floating around, one of the editors in NYC made the comment that my experiences were probably unique to Montana, and that if I’d lived closer to a big city, I’d have had a better time of it.

Which may, or may not, be true. I pointed out that Dr. Skotko’s (then recent) study about women’s experiences with the DS diagnosis delivery was very similar to my own, and that his study had included a wide range of respondents from all across the county.

And now, years later, it seems we still have work to do. I hope you’ll help Kori, if you can.

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11 thoughts on “Did you receive a prenatal DS diagnosis?

  1. My daughter has Turner syndrome, not Down Syndrome. Our prenatal diagnosis was given over the phone by my OBs office, with no information, other than, what seemed to me, an implication that we would terminate the pregnancy.

    Better info. came from the genetic counselor at the perinatologist’s office later in the day (but never any printed material), and eventually from a geneticist (but that was several weeks later when we could get an appt.). By then, I had found what I needed on the internet. But that can be a scary source of info (as you probably know) because I think it is skewed to the negative. There is a great brochure put out by the Turner Syndrome Society (A Guide for Families) that is positive and informative, but I had to find that on my own.

  2. I will email her to offer my opinion, but I’d life to encourage your readers that thanks to Senator Sam Brownback, who was equally moved by Dr Skotko’s study, the Prenatally Diagnosed Conditions Awareness Act, which passed in October will help women faced with a diagnosis of Down sydnrome obtain up to date medical information and referrals to support groups.
    I’m going to Washington this week to thank him in person.

  3. Thank you for sharing your experiences, everyone. And Niksmom, your point is an excellent one and something I’ve found to be true for myself, too–that the Dx may be different for our kids, but that our experiences as parents have so very much in common. We can all learn from, and help, each other, to better love and protect and cherish our children.

    xo

  4. I did not have a prenatal diagnosis but wanted to share that I live in a big city and the hospital had no information about down syndrome.The delivery nurses looked up a website (not a very good one) and printed out some info because I was asking for literature.
    My dear brother-in-law looked up a group in my area and had them send me a packet.

  5. As you know, Nik does not have DS. But I wanted to chime in here and state that I think there is still a long way to go and so very much work to be done to support and inform ALL new parents of children with any kind of diagnosis either at birth or shortly after.

    We were living in the Bay Area when Nik was born, then he was transfered to Children’s in Oakland. We got some support from the NICU social worker (who then left before we did!) but there was very little information given to us about what to expect, how to cope, things to think about. There was no parent support group at all.

    Based on that experience of such a lack of support, I spent several years thinking I was pretty much all alone on this journey. Now I know differently, but so many women don’t. Not just moms of DS babies.

  6. We didn’t get a prenatal DX, but after Stella was born (and I realized that the MWs had NO support material, I gave them a copy of your book. 🙂

  7. We had a homebirth with no testing so no prenatal indicators. Our midwife, the next day, suggested that the baby might have Down Syndrome since she observed some factors and set us up to go that day to get bloodwork done for the genetic test. We really were sure before the test but waited to tell anyone else, even grandparents until the results came back since we wanted folks to meet the baby on her own merits without influencing their introductions. Everyone was great, supportive and we were introduced to a family with a 7 year old with DS very quickly and we are still friends with them!

  8. Wow. And I exclaim that in disappointment that again I read about another person’s diagnosis given without any support.

    We are based in Ontario, Canada, and when we were given our diagnosis of Gabriel having Down syndrome (Trisomy 21), not only did our geneticist supply positive information, but our OB-GYN actually contacted friends of his whose daughter has Down syndrome. He did this out of the goodness of his heart so we could have a support in place during the rest of my pregnancy.

    Once Gabriel was born, we were unfortunate to have misinformation about his heart health, but a hospitalization when he was six weeks old led us to a wonderful pediatrician AND a fantastic cardiologist.

    Also, when Gabe was born, our support social worker from the Children’s Development Centre in our city came to our home with the parenting package from our local Down Syndrome Association, and even more contact names to help us with the transition to parenthood.

    Truly, our whole medical experience from the amniocentesis right through today has been a positive one outside a few unfortunate experiences.

    I don’t know if this will help the research since I live in Canada, but I wanted to express myself on this subject.

  9. Nope- we got a prenatal dx, and was given THAT over the phone. Nothing else.
    No support information, no local parent groups, no information on early intervention. Then, because Noel was healthy at birth, we got no information from the hospital, either. If he had been in the NICU, we would have been put in contact with Child Medical Services, and that would have started the assistance, I guess.
    Well, I assume so, because we got absolutely nothing. I called our local early intervention office and got us into the system when Noel was about three months old.
    Oh, and the city we live in has a population of almost 400,000.

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