In quests for perfection, should we decide who lives? 00:00

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Dimensions of Health The dilemma – and the decision

In quests for perfection, should we decide who lives?

Julie Messina’s son, Evan, has Down syndrome. In sharing her experiences, Julie gets at the heart of a modern ethical dilemma. Just because we can screen for genetic abnormalities – and in doing so, minimize and potentially remove the presence of disability – to what extent should we?

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There are two main prenatal tests for genetic disorders: screening, which is less invasive, and diagnostic, which are done on cells taken from the fetus or placenta. Source: The American College of Obstetrics and Gynecologists

Rachel Rock

Julie Messina is the mother of Evan, who has Down syndrome.

When she was pregnant with Evan 16 years ago, the pregnancy was not considered high-risk …. Julie was only about 30 years old. And so, she did not pursue any of the risky diagnostic tests that were available at the time. 

A lot has changed in the world of prenatal testing since Evan was born.

In 2011, a non-invasive blood test became available in the U.S. that made it easier and more accurate to screen for genetic abnormalities. Over the last decade, doctors have started to offer the test to younger, low-risk patients. 

According to an article in The Atlantic magazine, Denmark began offering the blood test to every pregnant woman starting in 2004. It’s become a standard part of prenatal care. Ninety-five percent of women who get a Down syndrome diagnosis terminate their pregnancy.  

In sharing her experiences and thoughts, Julie gets at the heart of a modern ethical dilemma. 

Just because we can screen for genetic abnormalities – and in so doing minimize and potentially remove the presence of disability – to what extent should we?

After all, medical advancements have also enabled people with Down syndrome to live longer and healthier lives.

Julie Messina 

My name is Julie Messina and I live in Cambridge, Massachusetts. I have three kids. We unexpectedly, 16 years ago, had a little bundle of joy enter our lives. He was whisked away and we had complications at birth and were told shortly thereafter that he would have something called Down syndrome. 

I was, I think 30. It was not standard to test for Down syndrome.  It didn’t even cross my mind. And to be perfectly honest, my husband and I actually had talked about it and said, you know, even if we were offered testing, it’s not something we would do because there’s nothing you can change with the result. If there’s nothing positive you can do, why even bother testing? 

I’m originally from Malaysia and I grew up in the 1970s in this Islamic, pretty conservative country. In Malaysia, at that time you just didn’t see people with disabilities, so you didn’t see them on the streets. I didn’t go to school with any people with disabilities because they didn’t have the right like they do in the US today. So they just didn’t go to school. I had no exposure. So as a result, I was scared and I was afraid of disability. You know, in my culture, education is really important. So my family really focused on that. Growing up, the first thing that came to my mind when I first met someone, used to be, well, what college did you go to? What do you do for work? And that was my basis for valuing an individual, which now I look back and I’m like I can’t believe I used to think that but yes, I used to think that. And I think all of this changed when Evan was born. Because of all the disabilities an intellectual disability was something that I really feared the most. And I remember when Evan was born, and I’m a person of faith myself, I remember praying, please, God, please cure him of this Down syndrome thing. I don’t know anything about Down syndrome, please any other disability except for an intellectual disability. 

Evan Messina, age 16. (Photo provided by the Messina family)

Down syndrome is one of the earliest or first chromosomal abnormalities that can be identified in utero. What we’re seeing is it’s almost like a genocide that’s happening against this targeted population because we can identify and target it. Science is only going to get better. And if we start targeting certain populations and groups of people, where do we draw the line? You know, pretty soon there’s going to be, and some people have said, there’s going to be a gene for autism. There’s going to be a gene for X, Y, Z. I myself, I have a genetic disorder. What if that could have been identified before birth. Do we as human beings want to be given the choice to play God to decide which lives have value and which lives don’t have value? And so we decide, in our quest for perfection, who’s allowed to live and who’s not allowed to live? 

Evan just has a joie de vivre and just a love for life that is unparalleled. He just loves his life and he just loves living, you know, who do we have the right to say that he doesn’t have the right to live? I know it’s not just him, because a lot of research has been done, most recently actually out of Harvard and MGH (Massachusetts General Hospital). Brian Skotko there interviewed hundreds of individuals with Down syndrome in the United States, asking them, are you happy with your life? Something like 97% or 98%  of them said, I’m happy with the way I look. And I think 99% of them said, I’m happy with my life. How many of us can say that about our lives? I mean, can you say that about your life?

You know, I think about how blessed I’ve been to have Evan be in our lives, because from him I’ve learned compassion, patience, creativity, just having to be creative in teaching him. Evan has helped us to really see the small things in life, too, I mean when he was young, I remember one day my husband and I were just walking along the Charles River. We were having a fight. It was a terrible day. And Evan has really high EQ. So he could sense that we were fighting and got up on a picnic table and said, ‘Stop fighting. It’s a beautiful day.’ And he brought our hands together. Even to this day, I mean, now he’s 16. If he senses that there’s tension, he would tell us to stop it right now, that that’s not important, to be nice to each other. 

There’s bias and discrimination in how people view people with disabilities. So, in the case of Michaela, who’s my second, when I was told to get checked for her as well, when I went in to speak with the doctor, he sat me down and he said, ‘Mrs. Messina, I have some good news for you. I want you to know that you’re not going to have another one like that again.’ I was really stunned at that insensitivity because I was holding my 1-year-old baby at that time in my arms and he knew my baby had Down syndrome. I remember leaving that doctor’s office crying, thinking, you know, how could you say that? You know, I don’t blame him. I had that bias, too, before Evan was born. 

You know, what I tell parents is you can’t predict the future. Life can be very, you know, normal, you know, in the sense of, see what Evan’s been able to accomplish. But I understand it’s a wide spectrum and there can be challenges and there could be challenges. But I think what you’ve got to remember is there’s hope for the future. You don’t know. 

You know, they told us that Evan was going to have speech delays, you know, he might have a hearing impairment and he does. He is actually, has complete hearing loss on one side and moderate hearing loss on the other. So he wears bilateral hearing aids and his speech is not very clear. So he still gets speech therapy. And so they told us speech is going to be hard for him. Don’t even try to teach him a second language. When I had said, well, you know what, my family’s biracial, so I want to teach him Chinese as well. We ended up pursuing Chinese lessons for him. And when he was in middle school, he actually won the prize in his class for being the best Chinese student. 

Evan Messina at the Massachusetts State House. (Photo provided by the Messina family)

He’s a really positive individual. And so in the one way it has impacted him, though, it does affect some of his self-esteem with just feeling like he’s not as good or not as capable. We also spend a significant amount of our activities with the Down syndrome community because we want him to feel good about himself and feel engaged and to have friends and mentors. 

I think he’s aware of it. And as he’s gotten older and able to articulate that and as he’s tried to build more independence in advocating for himself.  He also speaks to groups of medical students in training to share a little bit about his experiences living with Down syndrome so that they can have a perspective too as they’re on the front lines. I mean, some of the decisions they make or some of the advice or interactions they have with patients could literally be life or death. So we feel like that’s important for him. And he that’s a special pride of joy for him as well, to feel like he can be a leader in this community. 

I’m really proud of him. He’s really starting to understand what it means and to understand that it’s OK to be different and in fact, to be proud of that. I mean, one of the things that has happened with Covid-19 that’s really affected our family directly is the deprioritization of people with ID. During the crisis standards of care when hospitals were told that they had to triage for patients and patients with ID like Down’s syndrome were told that they would not be a priority for ventilators or ICU beds. That was really scary. We actually did some research because I wanted him to know what was going on and we followed what was happening in Alabama with the crisis standards of care in Alabama. And he said, ‘that’s not right Mom,’ he said, ‘if I get sick, I also should be able to get a ventilator. And if I was living in Alabama, that would not happen.’ And I said, I know we really have to write letters to our legislators to tell them. And he wrote a letter to Governor Baker and he said, this is happening in Alabama, that it got overturned actually by the federal government, saying this is discrimination against people with disabilities. 

Julie Messina 

Hey, Evan, do you want to say hello? 

Evan Messina 

To who? 

Julie Messina 

This is Ms. Rachel Rock, can you say hello? 

Evan Messina 

Hi Ms. Rock. 

Rachel Rock

Hi, Evan. How are you? 

Evan Messina 

Good, thank you. 

Rachel Rock

What’s going on with you today? Can I see your T Shirt? What’s it say? 

Evan Messina 

I go to CRLS and we were all given this shirt on the first day at CRLS. 

Julie Messina 

Now Ms. Rock doesn’t know what CRLS is. 

Evan Messina 

Oh, CRLS means I am part of the Cambridge Rindge and Latin School.

Rachel Rock

I know that school. That’s a great school. 

Julie Messina 

Yes. And speaking of which, aren’t you supposed to be in class right now? 

Evan Messina 

Yes, I’m getting the charger. 

Julie Messina 

Oh got it. OK. 

Evan Messina 

I’m not sure where mine is but… 

Julie Messina 

Great and can you go get your glasses and all your stuff on that you need so that you can actually be engaged in classes. 

Evan Messina 

That’s what I’m doing.  I’m getting my charger to be engaged.

Julie Messina 

Thank you. You need your glasses and your hearing aids. Please. Gosh. 

The Messina family on a beach outing. From left, Julie, Evan, Michaela, Marissa and Chris. (Photo provided by the Messina family)

Rachel Rock

In many ways, Evan is a typical 16 year old. He juggles a schedule full of extracurricular activities like playing the clarinet in the school band and practicing Taekwondo.  But he also goes beyond the responsibilities of most teenagers — in finding his voice as an advocate to doctors and politicians on behalf of people with Down syndrome.

For iPondr, this is Rachel Rock.

Audio story edited by Annie Sinsabaugh

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