Q&A with Michelle Sie Whitten

Michelle Sie WhittenCo-Founder, President & CEO, Global Down Syndrome Foundation

Q: Where were you working when you got pregnant?

A: I had a pretty demanding job as the President and CEO of a media company focused on the East Asian market and with most of our business in China. I was trying not to travel as much because we were actually trying to have a baby but as with all international business it was a 24/7 on-call job because of the different time zones.

Q: You had a prenatal diagnosis. Why?

A: My OBGYN suggested I get an amnio after I tested high on the AFP blood test showing I had a 1 in 9 chance of having a baby with Down syndrome. He thought it would be better to know ahead of time, if that was the case. He felt the more information the better, but he was not pushing termination.

Q: What was it like getting the amnio?

A: My husband Tom and I were nervous because we knew there was a chance, albeit a very small chance, that we could lose the baby because of the amnio procedure. Even though the chances are something like 1-2 percent, it doesn’t matter if you’re on the bad end of that statistic.

Q: Did you get genetic counseling with your amnio?

A: I remember a genetic counselor sitting me and Tom in front of a TV and showing us a video about Down syndrome. The video started by stating there was a chance the baby would result in miscarriage, a chance the baby would die before one, a chance the baby would die before three, and if he or she lived there was a whole host of medical conditions we may have to deal with. At the end of the video, the counselor came in and said “Mrs. Whitten, please don’t cry. You know 80-90% of people who have a baby with Down syndrome terminate, you can too” and she gave me a tissue. That was the extent of my genetic counseling at the amnio doctor’s office.

Q: What did you do when you got the diagnosis?

A: I was called on my cell phone, I was working, and told very quickly that yes, my baby would be born with Down syndrome. I locked myself in the bathroom and my husband had to come pick me up.

Q: How did you make your decision to have your baby?

A: Well, Tom and I are pro-choice and we didn’t know if we were going to keep our baby or not. Looking back on it, that seems almost embarrassing since our daughter is now the center of our universe. But at that time, we didn’t know anything about Down syndrome and what we were being clearly and strongly encouraged to do by the amnio doctor, was to terminate. The first thing we did was get online and Google Down syndrome. It became clear to us very quickly that the information provided by the amnio doctor was out-of-date. For instance, they told us that the lifespan of a child with Down syndrome was very short, but it’s something like 60 years old. We read a couple of books and then reached out to our local Down syndrome organization, the Mile High Down Syndrome Association, and asked to meet some children with Down syndrome. We met a girl and a boy and their families and within about one and a half weeks we decided, “We can do this. We can raise and love this child.” And then we never looked back. It was all about our little girl and making sure she got talked to and sung to even in my belly!

When we were researching Down syndrome on the Web, it became clear that there was a spectrum of ability. A small percentage of people with Down syndrome were born with typical IQs, a small percentage with severe impairment and the vast majority are solidly in between. The idea that we would terminate if the baby was low functioning and keep the baby if she was high functioning did not sit well with us. Nor did the idea of having someone else raise our baby. I learned that there are hundreds of families in the U.S. waiting to adopt babies with Down syndrome and the idea that someone else could handle it but we couldn’t didn’t make sense to us either.

Q: Who did you tell after you found out and what was their reaction?

A: We told my parents first. They had known about the testing so it was a given we were going to tell them the results. They were very supportive and told us that whatever our decision they would be there for us. We called Tom’s parents in England the same day. It was very difficult to watch as Tom could barely get through a sentence without crying. It was a hard time for everyone and there were a lot of tears shed. Looking back on it, it was not only the idea that our baby would not be “normal,” but the burden of the decision and the fear around the unknown that made it traumatic.

We did not tell anyone else for a long while. I can’t remember when I told my siblings but I know it wasn’t right away. They were all supportive but worried. Nobody knew what to expect. And I didn’t tell anyone at work, it was a very well kept secret. I couldn’t stand the idea of people staring at me every day at work feeling sorry for me. I really don’t relate well to pity.

Q: When did you finally tell your wider circle of friends and family?

A: It was right before my first baby shower. A dear friend, Lu, was hosting my personal baby shower and my office was hosting one shortly thereafter. I thought six weeks before her birth might be a good time to tell people. I tried it on by telling Lu first. Her reaction was a bit strange but it really was a good analogy in some ways and confirmed the way I was thinking. I said, “Lu, I have something to tell you. My baby is going to have Down syndrome.” She said, “Don’t listen to them. Don’t listen to those doctors. They don’t know what they’re talking about.” I replied, “No really, Lu, she will have Down syndrome.” She replied, “I have a friend who had the most handsome, brilliant, athletic son and the doctors said he was fabulous. When he was a teenager he was diagnosed as a schizophrenic. Nobody knows what will happen to your child. Just don’t listen to them!”

Q: What was your pregnancy like after your decision?

A: I’m the kind of person that if I can know, I want to know. Well-informed is well-armed. The good news was that it wasn’t a surprise the day of birth. I had time to prepare. I had time to understand (somewhat!) what early intervention services our daughter would need. I even went to an educational inclusion class at Mile High Down Syndrome Association (I was hoping nobody would see me there, as I hadn’t told anyone yet!). I went to the doctor a lot because I was a “high-risk pregnancy.” Tom, my husband, was hugely supportive, he came with me for almost every appointment and tried to make the pregnancy as comfortable as possible by cooking me healthy and wonderful food. But, there were moments that I would get emotional and afraid of the unknown. Going to The Children’s Hospital was particularly rough. I would see a child with any severe disability and I would think, that’s what my daughter will have! Even though most children with Down syndrome don’t require wheel chairs, anyone in a wheel chair for some reason was, suddenly in my mind’s eye, my daughter. I’d imagine her to be born with every possible medical problem a child with Down syndrome is likely to get. Perhaps the worst scenario that played out in my head was one of her being ostracized and made fun of at school. So there were ups and downs but physically, for the most part, it was a good pregnancy and my husband and I were on the same page.

My parents and siblings embrace my daughter no differently than any other member of the family. My husband and I were on the same page – our daughter may have Down syndrome, but she would not be defined by
Down syndrome.

Q: What made you think you and your husband could handle a baby with Down syndrome?

A: Firstly, Tom and I had spent time thinking about when we’d be ready for a baby in general. So we had reached some benchmarks that pave the way for any child. We felt financially we could handle a child. We had decided that since I was the major breadwinner, Tom would work on a handful of museum and gallery projects a year while being the main caretaker for our kids. So some of the preparedness we had for our daughter was really independent of the Down syndrome but certainly made the diagnosis easier.

Secondly, I believe I was born with what I call “a righteous gene.” I am first-generation Italian and Chinese. I did not grow up in a typical family and I was born a girl. And when I was a teenager my brother discovered he is gay. From before I can remember I have always felt passionately determined that people are equal, regardless of race, gender, or sexual orientation. Reading of persecution of any sort would simply get me revved up, ready to do something – fight, educate, and make a difference. For me personally I saw my daughter and her disability as another form of diversity that needed protection. From that perspective, I felt happily prepared to add to what I thought diversity was. Most important I felt that it would all work out because my family and I were on the same page. My parents and siblings embrace my daughter no differently than any other member of the family. My husband and I were on the same page – our daughter may have Down syndrome but she would not be defined by Down syndrome.

Finally, we met children with Down syndrome and we honestly thought we could handle the differences and challenges. What we didn’t expect was all the benefits of our daughter’s diversity.

Q: Did you have a plan as to how you would bring your daughter up after you got the diagnosis?

A: Tom and I had read some books about Down syndrome and we were determined that our daughter would get “early intervention” as soon as possible. I think she was two weeks old when we had our first meeting with Denver Options here in Colorado! We worked hard to understand what were the best therapies and best medical evaluations offered to children with Down syndrome and we were fairly frustrated that there wasn’t a lot out there in a succinct and accessible way. That’s part of why our family foundation has focused on medical care as its mission in improving the lives of people with Down syndrome.

We also knew that we wanted our daughter to have two things: (1) other children with Down syndrome who she would grow up with and potentially be friends with, and (2) an inclusive educational environment where she is able to model typical behavior and make friends who are typical. We still strive for this balance. Once a Down syndrome expert told me, “You know Michelle, just because there is another child with Down syndrome in the same school doesn’t mean your daughter and that child will like each other.” I responded that I knew this full well, but that growing up looking Asian in an all-White school, it would have been nice to have at least had one other person who was Asian. That is still our philosophy.

Global Down Syndrome Foundation President and CEO Michelle Sie Whitten with her daughter, Sophia

Global Down Syndrome Foundation Executive Director Michelle Sie Whitten and her daughter

Q: What was your reaction to your daughter?

A: When Sophia was born, I have to say I was just the typical mom. I thought I had just given birth to the most gorgeous little girl in the world. So I was surprised when people weren’t reacting to her in the same way. I would dress her up, show her off and I wasn’t getting the “She’s so beautiful!” And when she started grabbing things and crawling of course Tom and I thought “Well, she’s just a genius!” But there weren’t comments like “She’s so smart! Look how smart she is!” from other folks.

Then I tried something. I didn’t tell a few folks, including a photographer, that she had Down syndrome. And I started getting those comments. What I concluded from that experience is that people didn’t know how to react. They didn’t know what was appropriate. One friend later told me that she didn’t want to say “Oh she’s so smart” and sound patronizing or make me upset because she has Down syndrome and by definition was “retarded.” Oh well.

Q: What have been the biggest unexpected benefits of having a child with Down syndrome?

A: Having a child who is differently-abled has really expanded our understanding of diversity in the world. I can now see people who are differently-abled as great contributors to our society on many different levels. I did not see that before.

I come from a somewhat over-achieving family. I don’t know for sure but I believe that if my daughter had been born typically, I might have put her and her younger brother on a similar track: focusing more on achievement than quality of life. I honestly believe that having a child who is differently-abled has made me an infinitely better parent – one who is clued into my child’s needs, strengths, motivators, and self-esteem. I enjoy every minute with both of my children! And now I really have patience for all children. What an amazing gift.

I have met some of the most amazing people because of my daughter. First, I met lifelong friends in the Down syndrome social club that a handful of us established when our kids were just infants. Second, through my work, I have met leaders of various organizations serving people who are differently-abled including people with Down syndrome and I have witnessed first-hand their life-transforming work. To witness their work and to be part of a new Down syndrome movement is truly a privilege and rewarding beyond my expectations.

Q: What have been the biggest challenges in having a daughter with Down syndrome?

A: “Inclusion” was a big watchword in the books we were reading and among the people in the Down syndrome community we were meeting. Tom and I have been very challenged trying to find inclusionary schooling for our daughter. Sometimes we feel that a non-inclusive excellent special ed teacher is still better than a poorly orchestrated inclusion program. When I get frustrated about this I remind myself of all the parents I know with typical children who are not satisfied with their children’s schooling. Somehow, for our children with Down syndrome, more seems to be at stake. Tom and I work really hard to make sure our daughter is in an inclusive setting at school and that she receives the best educational services so as to equally promote social-emotional and educational goals. We really didn’t think we’d have to work so hard at this but we do.

Making sure that Tom and I are taking into account our daughter’s delayed development while not allowing it to be used as an excuse to misbehave or “quit out” of learning moments. Also, making sure there is a balance of free time and scheduled or planned time for both our children is a challenge!

On a macro level, we have come across many challenges through our advocacy work for people with Down syndrome. It has been challenging to educate people who have old and negative stereotypes about our children with Down syndrome. It has been challenging to get the National Institutes of Health to fund research that benefits people with Down syndrome on a comparable manner to other disabilities. And it has been challenging to galvanize our community that this issue transcends pro-life or pro-choice issues, that it transcends historical turf issues and that it focuses on truly and significantly improving the lives of people with Down syndrome.

Q: When did you stop working?

A: For each of my pregnancies I took off three months from work to focus on my newborn. My work place was very mom-friendly so I was able to lactate during work and between Tom and I, we worked it out pretty well. I also took time off when my daughter had her open-heart surgery. That was the scariest time for all of us. The idea that we could lose her was really more than I was able to fathom as a new mother. Fortunately, (touch wood), the operation was successful and although we get her checked every year our pediatric cardiologist doesn’t foresee any future operations. Because of this I am able to continue to work and hopefully make a significant impact on my daughter’s life and millions more with Down syndrome.

Q: Were you afraid to have another child after your first was born with Down syndrome? Were you afraid your second child would be born with Down syndrome?

A: I know there are many families who are happy to have a second child with Down syndrome. So much so that they proactively adopt a child with Down syndrome into their families. For Tom and I, we were just getting used to our daughter’s diagnosis and we were uncovering some pretty alarming discriminatory practices against people with Down syndrome when we contemplated our second child. At that moment in time, I remember feeling worried that our second child would be born with Down syndrome. I remember feeling worried that we simply couldn’t handle the weight of both of our children having Down syndrome. But I was no longer afraid of Down syndrome like I was before our daughter was born. I knew the benefits and the beauty a child with Down syndrome could represent but that didn’t take away my desire to also experience raising a typical child.

What I WAS afraid of was having a baby born with any sort of life-threatening disease! During the pregnancy with my daughter, I never thought for even a minute my child would not be typical or healthy. By the time I was considering having my second, I had experienced both the Down syndrome diagnosis and a life-threatening heart condition. For us, the life-threatening heart condition made Down syndrome look like a cakewalk. Well, almost anyway!

At the end of the day, we were determined to have at least two children and we couldn’t let our fear stand in our way. If we hadn’t been successful, we most certainly would have adopted.

Q: Any regrets, any grief, any fear?

A: I have never looked at my daughter and wished she wasn’t part of my family nor have I wished that she would have been born without Down syndrome. Her being born with Down syndrome is part of who we are as family and has defined my work for the rest of my life. However, I do wish that our federal government funded research in a meaningful way for people with Down syndrome so as to improve their health and their cognition.

The perinatologists that Tom and I were seeing during our pregnancy somehow missed, during three visits, that our daughter would be born with a complete atrial-ventricular septal defect and need open heart surgery at around three months old. We learned this when I was 32 weeks pregnant. This was a shock. There was the additional shock of having two doctors ask if we wanted to terminate the pregnancy. Since Colorado law states pregnancies can’t be terminated beyond 24 weeks, this didn’t make sense to us. The doctors explained that the Down syndrome would be an exception. Obviously we continued on with the pregnancy, but we started to understand some of the discriminatory practices being levied at our children with Down syndrome.

I don’t like to use the word grief, but there was definite fear. Fear of the decision (Would it be right or wrong for us?), fear of the unknown, fear of imminent open-heart surgery, fear that my child would be ostracized and made fun of. That society would reject, neglect or abuse her.

I did have a very distinct reaction of anger. At some point in the pregnancy, I became angered by the fact that my amnio doctor had provided me inaccurate information about Down syndrome, that our federal government had started to de-fund research that would help people with Down syndrome, that there was little research about how our children with Down syndrome learn that could be shared with teachers. What I felt was discriminatory practices against people with Down syndrome started as a feeling that has now turned into a mission.