Am I crazy or justifiably uncomfortable?

ketomommy · December 2018

My OB referred me to a perinatologist because of my ethnic background. Their office called today to schedule my first and second appointments.
They were doing the intake paperwork and the woman on the phone asked "does anyone in your family have a history of mental retardation?" I corrected her and said, "I believe the correct medical term is intellectual disability." She tried to argue with me and say that she can only ask what is on the form. I am a disability rights advocate. I said, "I can answer your first question, no one in my family has autism. I don't know what mental retardation is, but there are no intellectual disabilities in my family."
Then she told me it was "mandatory" that I come in for the 12 week ultrasound. I said that I am not comfortable with testing for down syndrome, it won't change the outcome of my pregnancy. She argued with me further that it was "mandatory" and made me feet as if I was being a problem.

Am I too much of an advocate? Or does this sound off to anyone?

babyginjuly · December 2018

Since when is the NT mandatory?

quinniebear · December 2018

My intake paperwork also used the term MR which I thought was odd (I work for a BH organization). I can't imagine an ultrasound being "mandatory" - I would ask for the doctor to contact you with further information, and definitely don't do something you're not comfortable with.

tsa208 · December 2018

Given your occupation especially, I can understand why you were frustrated.

The 12 week U/S may be for dating purposes, unless you've already done that. I feel that if you don't like your doc/doc office for ANY reason, even if you are being unreasonable, you should change and find a place where you are comfortable. Your doc visits shouldn't stress you out.

blackhottamales · December 2018

"When they were originally introduced, the terms “mental retardation” or “mentally retarded” were medical terms with a specifically clinical connotation; however, the pejorative forms, “retard” and “retarded” have been used widely in today’s society to degrade and insult people with intellectual disabilities. Additionally, when “retard” and “retarded” are used as synonyms for “dumb” or “stupid” by people without disabilities, it only reinforces painful stereotypes of people with intellectual disabilities being less valued members of humanity." https://www.r-word.org/r-word-why-pledge.aspx

I personally don't have an issue with using the term mental retardation when used in medical terms--it's when people use "retarded" or "retard" in a negative connotation I ask them to rephrase and refrain from doing so in the future. You have to pick your battles, using mental retardation as a medical term is not one of mine.

There are some great posts if you search this board on having the specific tests that might show an increased risk of down syndrome. The tests are very different than just needing to come in for a 12 week ultrasound.

At the end of the day you have to be comfortable and work with people you trust--if you don't like this clinic can you be referred to a different? have you asked your OB the specific needs of this referral?

coco2787 · December 2018

You have the right to refuse any testing. However, keep in mind that the NT scan also can detect possible heart defects. I understand any results wouldn’t change how you proceed with the pregnancy, but it may be useful to know if there was an issue early on so that you and your baby could receive more specialized care. Again, that’s a personal decision and you certainly can’t be forced to get the NT scan.

As far as terminology used, I agree with everything @blackhottamales said.

Bear14+ · December 2018

I just want to say, that I see why you are not wanting the NT scan because it won't change the outcome...but on the other side of that, *if* your baby did have down syndrome, there would potentially need to be extra medical staff and personal present at birth. There would also be other things they would need to prepare and monitor for throughout the pregnancy to make sure your baby is healthy. Just something to think about...although, I can't believe they are forcing you to do it! Seems like a something you should be able to opt out of!

nopegoat · December 2018

On baby #5, and I have never done the NT scan.

ketomommy · December 2018

I called my OB. They like this office because you see a doctor each visit. They said I can switch to maternal and fetal medicine at the hospital. They are not preferred because they do the u/s and then the doctor reads it later that day. I loved the doctor at MFM last time. I think I will go to the first appointment, but if I am not wow-ed by the doctor, I am switching to MFM.

ameliabedelia-2 · December 2018

The NT scan is for more than Down syndrome. It may be a requirement for their practice due to perceived liability if a life threatening condition (such as a heart defect), goes undiagnosed. My office requires certain testing as well as monitoring during delivery which many moms would prefer to opt out of. With my practice it just isn’t an option. That may be the case with your practice.

cvolkmar · December 2018

My background is in Early Childhood Special Education, so I totally understand your role as an advocate. When pregnant with our daughter, I/she was tested for Downs. It wasn’t going to change the outcome of our pregnancy either, but my mindset was more what early interventions would I need to have in place to be proactive if the test came back positive. Maybe think of it from
that perspective...

tsa208 · December 2018

By the way, to answer the original question, we're all crazy...we're pregnant 🤷🏽‍♀️😎

cindler · December 2018

I'm with everything that was said re being comfortable with your doc.

I may be naive, but why does your ethnic background warrant a special kind of doctor?

firecracker_mama · December 2018

While the testing isn't mandatory, the thought process is likely "why come to a MFM specialist if you're not going to cooperate with the testing that the specialist is well versed in?". Do what you want for your child but be aware of the point of a specialist.

And the receptionist likely has no formal medical education, must stick to the form as changing the verbiage can alter what the question means, so in reality you need to speak with the office manager about your concerns but don't take it out on the receptionist.

ketomommy · December 2018

@cindler Eastern European Jews are at risk for many disorders.

cindler · December 2018

@ketomommy thank you for the response!

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