A Test…and The Future

My mom and I talk a lot about the ethics of medicine. (Yeah, strange hobby.)  Has medicine surpassed what our consciences and hearts would otherwise tell us to do? Is there such a thing as “too much” intervention? Do our treatments do more harm than good? What is the value of a life and who gets to decide?

This all has particularly new meaning to me these days since every morning I wake up to the coos of a chromosomally enhanced child.  A child many people would have chosen not to deliver and raise had they known ahead of time. A child who had a heart defect some people feel warranted abortion.

The reality is that a full ninety percent of mothers with a prenatal Down syndrome diagnosis choose to abort their children. Ninety percent. That number is somewhat mind-boggling to me. But then I see some of the wildly misinformed websites available about Down syndrome. I read some… unique perspectives from people on the internet. I hear about how other mommas have been told about their children’s diagnosis and prognosis and that ninety percent sort of makes sense.

If your doctor informed you that your child would have an IQ of 30, you read online that your child would never be capable of loving you, and someone told you a horror story about Down syndrome from the past…well, I guess I have to say that in some ways I understand how the fear of raising such a child might make you consider an abortion.

Ninety percent. And that number only reflects the people who do, in fact, have a prenatal diagnosis and receive it in time to legally make such a decision.

So…ethics. Until now, there have been only two ways to determine with 100% certainty whether or not your child has a chromosomal abnormality before birth: CVS or amniocentesis. Women are guided to these tests for a variety of reasons – advanced maternal age, a marker on an ultrasound, a screening done in either the first or second trimester. Essentially, your OB detects something which makes him raise his eyebrow a little and recommends a CVS or amnio. This might also be recommended if your family has a history of birth defects.

The problem with these tests is they carry a risk of miscarriage. Doctors have varying rates of miscarriage, but the typically quoted average is 1% risk for CVS and .5% risk for amnio. Many, many mothers shy away from these tests because of this risk. I did.

Enter a brand new test poised for entry into the medical market. This is a simple blood test done in the first trimester. Non-invasive. Painless. (No, I don’t count the infinitesimally small pinprick of a blood test as a problem.)  In the testing phase this has had 100% accuracy in detecting Down syndrome, just like amnio.

Sounds good, right? In a way, yes. Many more mommas out there will know ahead of time and can prepare mentally, emotionally, and financially. In a way, very bad.

The problem is that the realities of a life with Down syndrome as it exists today, as it exists in a country where these children are no longer institutionalized, as it exists now that safe and effective treatments are available for the multitude of health problems that can come with this extra chromosome, as it exists now that our kids get early intervention services…these realities still remain mostly unknown to a vast majority of the medical profession.

Before this test comes out, there is a desperate need for all medical professionals to better understand Down syndrome. Before using a test that can detect with this level of accuracy and with zero risk of miscarriage, medical professionals need to be able to understand what a Down syndrome diagnosis means for the baby and the family.

Sadly, this is not likely to happen in time. In this case, medicine is outpacing our hearts. Instead of balanced, current information about Down syndrome (yes, the good and the challenging), many parents who take this blood test will be faced with outdated and prejudicial information. In fact, in one 2005 study, twenty three percent of anonymously surveyed doctors admitted to intentionally emphasizing the negatives of a Down syndrome diagnosis or outright recommending abortion. Can anyone seriously argue that’s ethical behavior? These doctors have a preconceived notion of the value of a life and have decided Down syndrome doesn’t quite fit the bill.

As a mother of a child with Down syndrome, I worry about what this test means. Thousands more mothers will know ahead of time that their child has Down syndrome, and many of them will be paired with doctors who think these children do not deserve to live. They may not hear about the positive life changes that come with such a diagnosis or about the overwhelming love we feel for our little ones and the abundance of love we receive in return.

I am not here to say what choice parents should make, but I fear that choice being made without realistic, current information. Like I said, information about the difficulties in this life tempered by its joys.

To that end, Lettercase undertook an amazing, far-reaching project to provide this type of information for medical professionals. They collaborated with many professional organizations, including the American College of Obstetricians and Gynecologists and the American College of Medical Genetics. You know, the people doctors listen to.  The end result is a book written by and for medical professionals. The goal is to prevent what I fear – the dissemination of bad information.

My hope is this makes the rounds before that test is widely used. It is simply not ethical to release this test beforehand…but I know the test will be used, ethically or not.

So what can I do? What can I do as just one mother?

I will continue to be honest. I will talk about the good and the bad. I will  share stories of my precious girl. I will show how her life is more alike than different. I will show how my daughter and our life are nothing to fear.

I will use this blog and I will use my voice.

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One response to this post.

  1. Found your blog from BabyCenter! She’s tooooo cute!

    Reply

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