What’s with that Down Syndrome test? Do I really want it?

Have you heard about that Down Syndrome test? Many people have heard that there is a test that you can take when you are pregnant to find out if your baby has Down Syndrome. Many people assume or are told that this is a routine part of care and don’t think twice about doing the test.

This test is a big decision. In fact, this is likely one of the first parenting decisions you will make about the baby you are carrying. It is really important to stop and really think about this one. Get information about the test and its implications. ‘Stop and Think’ before answering the question, “do I really want it?”

img_0312What is the Down Syndrome test?

Integrated Prenatal Screening or IPS is a screen that checks to see if there is an increased chance that your baby has Down Syndrome, Trisomy 18 or an open neural tube defect like Spina Bifida. I’ve provided a link to Prenatal Screening Ontario’s brochure that you should check out. It provides good details about the test itself.

What is the purpose of the test?

If you want to terminate your pregnancy if your baby has Down Syndrome, Trisomy 18 or an open neural tube defect then this is the first step in that direction. The information from IPS testing does not help the baby you are carrying. IPS testing does not lead to improved health outcomes. If you screen positive then you are eligible to have a test that can actually diagnose Down Syndrome, Trisomy 18 and open neural tube defects.

How is the test done?

The test includes an ultrasound and blood test between 11 weeks and 13 weeks + 6 days of pregnancy and then another blood test between 15 weeks and 18 weeks + 6 days of pregnancy. After all of this has been completed a result will be sent to your health care provider. IPS testing is not available in all communities so it is possible that you might have to travel to another community to access this.

 What can I expect if I screen positive?

If your IPS comes back positive it does not mean that you baby has one of those conditions. You will be offered a further diagnostic testing called chorionic villi sampling or amniocentesis. You will also be offered genetic counselling. If your baby is diagnosed with Down Syndrome, Trisomy 18 or a neural tube defect then you will have access to the option of termination. Chorionic villi sampling, amniocentesis and termination may not be available in all communities so you may have to travel to access these services.

What are the limitations of the test?

The IPS screen doesn’t tell you if your baby actually has Down Syndrome, Trisomy 18 or open neural tube defects. This is just a screen. See above, “What can I expect if I screen positive?

A diagnosis doesn’t equal a predication about a person’s life. For example, some people with Down Syndrome will graduate from college and have a career while others will require support throughout their lives. A person with Down Syndrome who requires support their whole lives may be a successful artist and beloved aunt. A medical test can’t tell you what kind of person your child will be. Sensitive? Funny? Charming? Considerate? Passionate? Opinionated? 

IPS only screens for three disabilities. There are countless kinds of disabilities and diagnoses that IPS does not screen for. The rate of disability in the general population is 1-3% That means that for every 100 people, 1 – 3 of them will have a disability. The overall rate of Down Syndrome is 1 in 1000. Having an IPS screen come back negative does not mean that your baby doesn’t have a disability.

IPS results are not perfect. If you have a positive IPS result it does not mean that your baby has one of the three conditions. If you have a negative IPS screen it does not mean that your baby doesn’t have one of the three conditions. The Ontario Prenatal Screening brochure has a great graphic showing the data (page 10).

Why should I think carefully about this?

There are many good reasons to think about this decision before proceeding. The first question to ask yourself is whether or not you would choose to terminate a pregnancy if your baby had one of the disabilities listed. If the answer is no, then there is no need to do the test. If the answer is yes, then skip down to the heading, “What should I think about if I do want to terminate my pregnancy if my baby has one of those conditions?” 

Many people think, “but I want to be prepared!” That is an important intention. We want to make sure that we are doing everything we can to be the best parents that we can be. And midwives are all about providing information so what is the problem? My concern with the idea of “preparing” for a child with a disability is that it shifts your mind and heart in the wrong direction. When people find out that their child may have a certain condition, the first thing they usually do is Google the condition. And mostly what Google will provide is a list of related complications.

Typically, when a family is expecting a baby they imagine things like who their baby will look like and what their baby will be when they grow up. Parents imagine their child’s first word, teaching them to ride a bike and their first day at school.

When Google tells you that your child might have a long list of conditions and complications then you prepare for those conditions and complications and you lower your expectations. Child development experts will all tell you the same thing. Children rise – or fall – to the expectations that are set for them. Regardless of whether your child has a disability or medical complication or not, they will definitely benefit from your dreams of a full and typical life. In fact, after shelter, food and love, having high expectations and dreams for your child may be the single most important thing you can do to benefit your child. Hold on to your dreams and expectations. Protect them. Set the bar high. Don’t allow yourself to be distracted!

If your IPS test comes back positive you will likely worry quite a bit. If you are not planning on terminating the pregnancy then why set yourself up for worry? Pregnancy is a special time in your life. Worrying rarely accomplishes anything valuable. Why do that to yourself? It is very stressful!

What should I think about if I do want to terminate my pregnancy if my baby has one of those conditions?

If you want to terminate your pregnancy if your baby has Down Syndrome, Trisomy 18 or an open neural tube defect then IPS is definitely your first step. 

I encourage you to reflect first. Because, of course, this is a big decision!

You might want to think about why this is your choice and be sure that all of your assumptions are accurate.

Consider your sources. Do you have a personal relationship with someone with a disability? If not, you might want to read some blogs or websites run by people that do (there are a few in the Resource section below). Check out what people with disabilities say about their own lives. Watch this TedTalk Video.* Read more than one source. Look for positive stories. If you believe that the lives of people with disabilities and/or their families are not worth living then you definitely haven’t read enough positive stories and watched that TedTalk Video!

Do you know people with a disability because you are a teacher, social worker or developmental service worker? Or does someone you know who works in those fields tell you about their students or clients with disabilities? If all you see is bad stuff then there might be something wrong with the service system – not the person/people with disabilities. Check out the TedTalk, blogs and websites as mentioned above. 

There are a number of reasons why people decide to terminate a pregnancy if they find out that the fetus has a disability. I have not tried to cover them all here. People’s lives are complex. This is not an easy decision for most people or one that most people take lightly. 

Disclosure of bias

I believe that people have a fundamental right to make decisions about their bodies including whether or not to terminate a pregnancy. I also believe that targeting people with certain qualities for termination is eugenics. I believe that eugenics is a bad idea. I do not believe that people who choose to terminate their pregnancies are bad people.

Studies have shown that many people are not provided with adequate information about genetic screening and so are not making an informed choice. It is unfair to ask people to make a decision about this without being provided with information. Your health care provider cannot recommend for or against this test. This is a decision only you can make. You should have all the information you need and time to really think about it in order to make an informed decision. 

In my experience, people can think of reasons why the test makes sense. Not as many people are aware of some of the reasons why you might choose not to do the test. This blog post is biased towards helping people to start really thinking deeply about those reasons. This blog post is not intended to cover all of the reasons to think carefully about your decision regarding IPS testing.

For additional considerations about genetic screening check out the Association of Ontario Midwives Genetic Screening Task Force Statement. If you are motivated to think about discrimination and marginalization of people with disabilities please check out the International SRV Association.

Conclusion

Please ask your midwife or care provider for as much information as you want and need in order to make a informed and thoughtful decision about IPS testing. We will respectfully support your decision no matter what you decide. 

Resources

* It is unfortunate that this TedTalk used the title All Lives Matter because others have used the phrase to undermine the very important, valid and necessary ‘Black Lives Matter’ movement. 

Enjoying the Small Things

Happy Soul Project

My DS Journey

Rora’s Adventure

Paul’s Blog

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Genia Stephen is a registered midwife and lactation consultant with Generations Midwifery Care. You can learn more about Genia here.