CHOOSING NAIA- Mitchell Zuckoff (1999) A Review and Reflection

In 1998 Greg and Tierney Fairchild, a young thirty something professional

couple, found them pregnant with their first child- decision that excited them, and a child

that was very much wanted by them. Like most couples expecting a child there were

plans and dreams and hopes for the future of their child. But all that changed with one

visit for a routine ultrasound. Detection of a heart abnormality will eventually spiral into

a strong indication that their child has the genetic birth defect of Downs Syndrome. This

series of articles chronicles the roller coaster like ride through the process of determining

whether to terminate the pregnancy or not, navigating the comments and opinions of

family, adjusting their expectations and ultimately the interminable wait for the arrival of

their daughter Naia. Unlike most couples whose only decision is whether or not to get

pregnant, they must also decide whether or not to choose parenting a child with a

disability or terminate the pregnancy. In many ways this series of articles looks at the

cultural influences placed on the decision to terminate a pregnancy, and how a society

reacts to the decision to not to terminate.

According to the CDC, “Down syndrome continues to be the most common

chromosomal disorder. Each year, about 6,000 babies are born with Down syndrome,

which is about 1 in every 700 babies born” ( CDC, 2019). It also appears to be among

the most easily detected birth defects through maternal blood draws and ultrasounds of

the fetus at relatively early stages of the pregnancy. This may be one of the reasons for

the increasing number of terminated pregnancies by families who have been told that

their child will be born with Downs Syndrome worldwide. According to a study in

Prenatal Diagnosis, indicates that the termination rate in the United States for
pregnancies terminated as a result of prenatal diagnosis of Downs Syndrome is about

67% . Research also suggests that, “that termination rates have decreased in recent years,

which may reflect progress in medical management for individuals with Down syndrome

and advances in educational, social, and financial support for their families” ( Natoli etal.

2012).

This is not true in other countries where screening for Downs Syndrome is

routinely done for all pregnancies on a national level; in the termination rate for a

diagnosed Downs Syndrome pregnancy is . In France it's 77 percent (2015); and

Denmark, 98 percent (2015). in the UK it is 90% (Wakeman, 2018). In Iceland Down

Syndrome is nearly eradicated with a 98% termination rate. They use a combination test

which includes a blood test, an ultrasound and consideration for the mother’s age to

determine a diagnosis of Downs syndrome. Icelandic geneticist Kari Stefansoon states

that, “"My understanding is that we have basically eradicated, almost, Down syndrome

from our society -- that there is hardly ever a child with Down syndrome in Iceland

anymore. "It reflects a relatively heavy-handed genetic counseling," he said. "And I don't

think that heavy-handed genetic counseling is desirable. … You're having impact on

decisions that are not medical, in a way” (Quinones,2017). according to Hulda

Hjartardottir, head of the Prenatal Diagnosis Unit at Landspitali University Hospital in

Iceland, "We try to do as neutral counseling as possible, but some people would say that

just offering the test is pointing you towards a certain direction" (Quinones, 2017

This got me to thinking about how the medical community handles and

delivers the testing results to the couple facing the possibility of a baby with Downs
Syndrome. If you use Choosing Naia as an example of how it is handled you will find

a mixed bag of answers. A technician doing and ultrasound says, "I feel so bad for

you guys," says Kolano, the technician. "This is so tough, but it's better that you find out

now." When asked what they should do once the Fairchilds have a diagnosis, one doctor

says, “ ‘People do all sorts of things in this situation.’ Through a haze of emotion, they

hear him ramble through a noncommittal answer. He says some people don't abort under

any circumstances, and others abort if the child isn't a boy. He also says an abortion

would have to be done elsewhere; St. Francis is a Catholic hospital.” Mean while, a

second opinion says, "Everything will be fine. Your biggest worry is going to be whether

your child wants to ride a motorcycle or get a tattoo." In the hallway outside her office

are bulletin boards covered with photos of children who have undergone successful heart

surgery. They are babies, little kids, and teenagers, in a rainbow of colors. Some have

Down syndrome.” . (Zuckoff, 2019).

People look to medical experts for science based data and results to help them
make all kinds of medical decisions. The addition of personal bias into the delivery of
that information while often unintentional and /or meant to be helpful often complicates
the decision making process. While not quantitatively evaluated, the added mixed
messages from family and friends about what to do , or what people might think is an
important factor that can not be over looked. You see the struggle unfold as they navigate
their path. There is one exchange between the Fairchilds that demonstrates the struggle.

"If we have this baby, just get ready for the onslaught of stupid, maybe
well-meaning, but stupid comments. We're going to have to deal with them for the
rest of our lives," he tells her. "Tierney, we're going to have to go into our child's
school, fighting with administrators, changing this and that. I'm going to have to
make sure people aren't abusing my child, putting him in the back of the room or
 locking him in the closet. This is what we're going to have to do. But I'm mad
about it." He is leaning toward abortion. But Tierney has awakened more
peacefully. For the moment, her confusion and sadness have passed with the
night. She tells Greg: "We both consider ourselves to be pretty strong people. If
this is going to be a worst-case scenario, then maybe we're the right parents to
take this on." ( Zuckoff, 2019)

What starts out as a very personal private decision is made in a very public forum. Social
and cultural norms seep in from family, medical opinions, some asked for and some just
given, and tests offered as routine, religious beliefs and practices all serve to cloud the
issue.

Earlier in this review, I indicated that the US termination rate for pregnancies
diagnosed as being a child with Downs Syndrome was at 67%, far lower than in many
parts of the world. Why is that? According to Natoli et al, research suggests “that
termination rates have decreased in recent years, which may reflect progress in medical
management for individuals with Down syndrome and advances in educational, social,
and financial support for their families”. These are important factors in bringing any child
with a potential disability into the world and perhaps even more important for those
whose children are not diagnosed until after birth. The parent that feels there is a future
and support for their child, no matter what is more likely to more comfortably accept the
differences and challenges that every and any child brings to a family. Laws such as PL
94-14 and IDEA and legal decisions such as Endrew F. vs Douglas County Schools, the
evolution of Early Childhood Intervention programs, inclusive education, and Medicaid
benefits are all indications of governmental support for children with disabilities. Social
supports such as the National Down Syndrome Society, Special Olympics, The Arc and a
large number of parent support groups supply unlimited emotional and social support for
both families and children alike. No parent or family needs to feel that they are alone.
While there is room for improvement, as a nation I believe we should be provide of our
attempts at supporting families and their decisions as it relates to children with special
needs.
 Choosing Naia was such an insight into the difficult decisions surrounding the
information that the child you are carrying has the potential to have a disability. This
should be a must read for all teachers! Whatever the decision it is the parents to make
and judgement need not be made about it by any outside influence once it is made. As a
final note, I read the follow up segments to the original series of articles give to us for
this assignment. I was curious about whatever happened to Naia… was she healthy? Was
she happy? Was she able to be an accepted member of her school community? I was glad
to see a resounding Yes to all of these questions. The video of her being voted
Homecoming Queen at her Virginia high school in 2016 says all I need to know.

Down Syndrome Fact Sheet, ( 2019). National Down Syndrome Society.

Facts about Downs Syndrome.(2019). Centers for Disease Control and

Imam, J. (2014). The unexpected lives we're living. Retrieved October 15, 2020,
from https://www.cnn.com/interactive/2014/12/ireport/unexpected-lives/

Natoli, J.L., Ackerman, D.L., McDermott, S. and Edwards, J.G. (2012), Prenatal
diagnosis of Down syndrome: a systematic review of termination rates (1995–
2011). Prenatal Diagnosis 32: 142-153. doi:10.1002/pd.2910

Quinones, Julian , and Lajka, Arijeta (2017). "What kind of society do you want to
live in?": Inside the country where Down syndrome is disappearing. Retrieved
October 3, 2020, https://www.cbsnews.com/news/down-syndrome-iceland/

Wakeman, Jessica.(2018). The Debate Over Terminating Down Syndrome