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What I Wish Doctors Had Said When My Child Was Diagnosed With Down Syndrome

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For many of us who have kids with Down syndrome, our doctors have not had the best “bedside manners” when delivering the diagnosis. Some of our doctors deliver the diagnosis as if it was tragic news, and many are soon to bring up abortion in the case of prenatal diagnoses.

While some doctors do a great job at delivering a diagnosis and providing up-to-date and accurate information — some even connecting their patients to local Down Syndrome Associations or other parents — for many parents, the diagnosis experience is negative.

Often times, those negative words don’t match the reality of having a baby with Down syndrome and how beautiful our life can be.

We reached out to parents in our community and asked them what they wished their doctors had said upon delivering the diagnosis. These were their responses:

1. “Congratulations, you have a beautiful healthy boy.” — David M.

2. “I was in the recovery room after my C-section and the OB said, ‘I think your son has Down syndrome.’ Then he asked me, ‘Didn’t you get tested?’ No. I didn’t get tested. Because it wouldn’t have mattered. I wish he would have told me, ‘I think your son has Down syndrome, but I promise you, your son will be amazing and have an incredible life. You have nothing to feel sad about.’” — Vanessa R.

3. “Congratulations! You are one of the lucky ones to have someone so special in your life! The love will overwhelm you!” — Julie D.

4. “When I was told, I just scooped her up and said, ‘What adventures we will have. There are no limits on what you will achieve.’ And 17 years later I was right.” — Kym S.

5. “What [our doctor] said was perfect! That our child was beautiful and we would be wonderful parents!” — Heather T.

6. “My doctor said, ‘This news isn’t a tragedy! This is the best time in history to have a baby with Down syndrome. With early intervention therapy, they are doing amazing things. People with Down syndrome are going to school with their typical peers, graduating from high school, going to college, getting married, running businesses, and are generally delightful people. If he makes it through this medical crisis, he will bring your family joy. His siblings will adore him. God will give you the strength you need and you’ll be just fine.’ It was hard for me to compress what he said, but he was right.” — Kimberly W.

7. “I wish [doctors] hadn’t whispered the diagnosis to us like it was something to be ashamed of.” — Angie M.

8. “Everything will be just fine. Would you like to hold your baby?” — Brooklynn S.

9. “I wish our doctor had been equally positive as he was negative. He never once mentioned that our lives would be ‘normal,’ that we would do the same things with our baby girl that we did with her older sister. I wish he had said that she would be able to feed herself and dress herself (he said the opposite). I wish he had been better informed and I wish he knew what life would be with a child with Down syndrome. I wish he had seen value and worth in my unborn baby.” — Maria K.

10. “The genetic counselor called my husband and me and told us the diagnosis over the phone, and when she asked if we wanted to know the gender of our baby it seemed like she was very unenthusiastic when telling us and seemed to be more interested to tell us our options, which included abortion. Even when we went for a follow-up in her office and we told her it wasn’t an option, she still brought it up.” — Angel J-H

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11. “After going through genetics with a hospital (my midwives required it), the pressure was horrible to abort him. I wish during pregnancy they would have been supportive in having a healthy baby. I almost lost my son to hydrops because of inadequate care. After he was born, a simple congratulations would have been sufficient.” — Lena E.

12. “I was able to tell my daughter had Down syndrome and actually asked the nurse. They couldn’t legally answer and only told me the neonatologist would be in too see us. He winced and danced around saying it. I was actually the one to say the words ‘Down syndrome.’” — Brad B.

13. “I wish the recovery nurses hadn’t been so somber. The NICU (delivery six weeks early) nurses treated my twins (one with Down syndrome) like it was no big deal. And ya know what? They knew what they were talking about. The geneticist was less than supportive. It’s just Down syndrome. It’s not fatal, it’s not contagious, and it’s not unmanageable.” — Chaula B.

14. “First, I wish they said congratulations! Second, I wish they gave me information on Down Syndrome Diagnosis Network (DSDN) and how I could meet other moms in my position for support with everything I was feeling. I desperately wanted to ‘meet’ someone going through what I was and it took me seven months to find them.” — Mandi D.

15. “I was told over the phone by my genetic counselor. I knew absolutely nothing about Down syndrome at the time. I wish I would have received the news with my husband, at least definitely not over the phone, and not in such a somber manner! After that, I totally shut out the genetic counselor and never wanted to go back to see them.” — Sasha G.

16. “We didn’t know before his birth, but when it happened, we received the utmost of support from the entire medical team. We were told, ‘Don’t change anything you were planning,’ other than putting him into group daycare due to his health complications. However, at one point, we were told, ‘Don’t expect too much, they tend to mimic what they see, rather than think for themselves.’ Totally wrong on that one.” — Jodi B.

17. “My brother is 51 years old. The doctors then told my mom he would just, ‘lie in bed and stare at the ceiling’ his entire life. Not so. He is the joy of many people’s lives and lives a happy and productive life. He is on Facebook and woe be us if his sisters do not like every post he makes. I taught him to read when he was about 7 or 8 and for some unknown reason he began to be obsessed with the National Inquirer and would read well enough to piece things together and torment all of us with Hollywood gossip. He adores George Strait and the Dallas Cowboys and best to not let on if you root for another team. He knows every birthday of every relative on all sides of the family, and when I try and correct him that I am really only 47 (cough) he gets mad at me and informs everyone on Facebook how old I really am — even brothers with Down syndrome can be a pain in the ass. He knows no enemies and nothing but love in his heart — the best brother ever to his big sis — if you don’t count the times when I was a teenager and he would hide behind the sofa when I had a boy over and pop up and say, ‘kiss her, kiss her.’” — Cheryl C.

18. “My daughter was born in a small town hospital in 1961. She was delivered by our family physician who either did not know or did not tell us. When she was 6 months old, we took her to a pediatrician in Houston because she had not been able to nurse successfully and then still had difficulty when I switched her to a bottle. The pediatrician asked, ‘Did your doctor tell you that your child is Mongoloid?’* I said, ‘No.’ He explained how that condition was, probably why she couldn’t nurse because of low muscle tone. At the end of our visit, I said, ‘My husband and I want our baby to have the best life she can have. What can we do to make that possible?’ He said, ‘Take her home and continue to love her the way you have since she was born. She will be the greatest blessing you and your husband will ever receive.’” — Alice P.

19. “I wish they said, ‘Congratulations’ instead of, ‘go home and grieve for the baby you thought you had.’” — Suzie H.

20. “My doctors were actually pretty great. Our genetic counselor laid out all options and told us that Cincinnati has one of the top Down Syndrome communities. And my OBGYN practice told me of the great people they know with Down syndrome. Once we made our decision, no one tried to change our mind.” — Lissa R.

*Editor’s note: While the term “mongoloid” was used in the past in reference to Down syndrome, the term is no longer used and it offensive to people with Down syndrome. 

Does your child have Down syndrome? What do you wish doctors had said when delivering the diagnosis? Let us know in the comments.

Originally published: December 13, 2018
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