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8 Insensitive Comments Medical Professionals Often Make About Down Syndrome

Medical professionals are generally selfless, caring individuals that society appreciates now more than ever. They are our COVID heroes.

However, too many families of children with Down syndrome have experienced uncaring and hurtful comments and behavior within the medical community. While this is the behavior of a small percentage of the medical professionals families interact with, the fact is that most parents of children with Down syndrome have had bad interactions with the medical community and their child.

Here is one personal incident. My daughter was seeing a specialist for her eye exam. My daughter has Down syndrome.  It became clear that while the staff was “nice,” they and the doctor did not think it mattered if she could see well or not. Questions like, “Does it really matter?” and “How much does this really matter for her school?” quickly led me to “prove her worth,” telling them the hard classes she took in school along with the fact that she was fully included. She was spouting off facts she was learning. That should not have been necessary. It should not matter what classes she was taking. Everyone should be worthy of good diagnostic care. We switched doctors immediately. We then found out she had congenital cataracts, a fact that no specialist had bothered to share with us until then. Our daughter was 16, and that was four years ago. That bothers me to this day.

The Mighty recently asked its community of families who have a child with Down syndrome to share “harmless” comments they had heard about their child that were actually hurtful. Hundreds of people responded. There were so many comments related to medical professionals that this story with their comments was warranted. Hopefully, this will lead to more constructive conversations and continuing education on this topic for all medical professionals.

1.
Being labeled as “other.”

“From a pediatric consultant. ‘Well, he’s very good looking for one of them.’ My son was 5 at the time. He’s now 22, but this I recall vividly. It still stings.” – Sharon G.

2. Being shocked with insensitivity.

“A nurse acquaintance asked me if they told me my son’s life expectancy.” – Wendy L.

“A pediatrician once asked if she could bring in a medical student, and I said that would be fine. The pediatrician proceeded to use my child as a prop while she pointed out all the physical features of Down syndrome to the student. It was incredibly insensitive.” – Jennifer S.

“A nurse said to me, ‘You’ll be lucky if your husband stays with you now.’” – Ann M.

“A nurse at a wellness visit said, ‘She will never go to college so that will save you some money.’” — Julie K.

3.
Seeing low expectations from the start.

“A NICU doctor told me to give my daughter a name that was easy to spell. I wish I was kidding.” – Jennifer S.

“‘She won’t look like either one of you, and the most you can hope for is her bagging groceries.’ This was stated by a doctor at our first ultrasound appointment.” – J.J.L.

4.
Feeling a lack of empathy. 

“An older doctor responded with ‘bad luck!’ when I pointed out, at our very first consultation, that my daughter has Down syndrome.” – Pia S.

“Eight hours after my child’s birth, and unexpected diagnosis, a nurse said this to my husband as he was comforting me. ‘Everyone wants a perfect baby, but not everybody gets one.’” — Krista T.

5. Dealing with professionals stuck in another century.

“’Institutionalize him before you become too attached.’ (He was 4 days old.) This was stated by the genetic specialist nurse/assistant.” – Ann-Marie R.

“My newborn son’s hospital discharge papers said ‘Appearance – abnormal.’ That hurt more than anything else then or since because I had waited many years for a baby and I thought he was the most beautiful baby I’d ever seen!” — Joanne M.

“My pediatrician flipped through a medical book and said, ‘This is how it is going to be.’ He gave the worst scenario possible.” – Heather D.

“I was 19 years old when I had my son. The doctor came and sat on my bed with a folder that held adoption papers for me to sign. He said I was a young woman and I shouldn’t have to deal with a burden like this with my whole life ahead of me.” – Ana D.

“The nurse in the maternity ward as she was changing my sheets, ‘ No one would blame you if you gave him away.’” Paige B.

“I was told by the specialist health visitor not to worry because on a positive note, I get to keep my baby like she is for a lot longer than most parents. My baby was 1 week old.” – Lisa W.

6.
Hearing the diagnosis for the first time from professionals with the combination of no bedside manner and ignorance.

“’Why didn’t you get tested?’ My doctor said this after he told me he thought my son that I’d just given birth to has Down syndrome. It says a lot about how poorly doctors give a diagnosis of Down syndrome – both prenatally and postnatally. Down syndrome is not a disease. It is not a curse. When people are given the diagnosis of Down syndrome for their child, they need to be given the upside too.” – Vanessa R.

“The doctor who delivered my son said, ‘We think he has Down syndrome. I’ll have you talk to my nurse – she has one.’ To this day it still hurts.” – Sue M.

“When my son was born, he was taken straight to NICU as he was having breathing difficulties. The midwife came back into the room, bearing in mind that I still had not held my son, and said this to me. ‘You will grieve for the son you never had because he has Down syndrome.’” – Emily M.

“The OBGYN on call who delivered my daughter told us she had Down syndrome like it was a death sentence. A truly horrible doctor.” – Janice L.

7. Feeling as if the professionals see the diagnosis and not my child.

My OBGYN constantly referred to my child as a ‘Down’s baby’ on the first follow-up appointment. We had just found out and I was so hurt and angry. He was a baby boy and should not have been defined by anything else.” – Tammy P.

8.
Seeing that professionals don’t value my child’s life. 

“’With your permission, we will go ahead and terminate.’ My doctor said this after test results confirmed the soft markers were right. I was 13-15 weeks pregnant at the time.” – Dasha R.

“The hospital told me to go home and just forget that I had a baby. They said he would be a ‘vegetable’ and they would keep him there to do research on him. He is now totally independent with a great job and his own place.” – Betty S.

“My son was a baby in the hospital about to have open heart surgery. An aide asked me why we were bothering to do the surgery.” — Cecilia H.

Getty image by LSOphoto.