When What Seems Broken is Perfect: The
Mother of a Disabled Child Tells her Story

(Note: A mother known to LifeSiteNews.com,
and who would like to remain anonymous,
wrote the following article in response to
an op-ed that appeared in the Globe and
Mail. That op-ed was written by a mother,
calling her self C. Smyth, who told how she
chose to abort her unborn child because the
baby suffered from a chromosomal disorder.
“Isn't it more cruel to bring a child burdened
with so many disadvantages into the world?”
Smyth wrote.)

July 20, 2006 (LifeSiteNews.com) - The
graph is still taped to the inside of my
kitchen cupboard, pencil on a string
dangling down beside it. It depicts the
progression of my newborn daughter’s
weight, most days showing a moderate
increase, and thus reflects a thriving
child. It ends abruptly at 80 days.

Recently, C. Smyth shared her agonizing
and very personal decision to terminate
a pregnancy after testing revealed a
severely disabled child.

My husband and I were faced with a similar
difficult decision. We too were in our 40’s,
educated and financially stable. We have
5 children at home and we love sports and
travel. The kids do well at school, are athletic,
and all are healthy as horses. Life was good
to us.

We first heard of our daughter’s genetic
condition long before she was diagnosed.
It was considered a lethal condition, an
extra 13th chromosome. Most babies don’t
make it to birth and those that do live a few
years and are severely disabled. I thought,
“Well, what is the point of that life?”

When the geneticist uttered the dreaded
words, “your daughter has trisomy 13,” and
it was a diagnosis about my baby and not
someone else’s, the reality was entirely
different. With the ferocity of a lioness, I
wanted to love and protect this little girl,
and do all that I could for her. If her
existence was only to be a few more
months of kicks and flutters in utero,
then I wanted her to have that life for
the sake of both of us. We named her
Annie.

After the diagnosis, the research began. It
was frantic, and went long into the night
for months. I researched medical details
and personal stories. We communicated
with parents all over the world who had
a child with this very rare condition. We
discovered that the babies can live longer,
but they may need a lot of medical
treatment. The most amazing discovery
was that the parents continually stated
that they treasured and delighted in every
day of their child’s life. They knew with
certainty that the gift of that life was not
theirs to keep. The children, called
“survivors” were blissfully happy and
progressed developmentally, albeit slowly.
It became increasingly clear to us that unless
the medical intervention to provide life was
excessive, Annie was better off alive than
dead.

We were not sure how we could do it. I was
the kind of mom who usually forgot to pack
a diaper bag. I would often be impatient when
one of my children couldn’t master the math
skills in their homework. Could I ever develop
the patience for a child who may not be able to
sit on her own for a year? How could we fit
Annie’s care and needs into our busy schedule?
We had 5 soccer teams in the summer! We were
more frightened than we had ever had been in
our lives. Love for Annie compelled us forward.

Annie was born full term, crying. She was mildly
afflicted, as the syndrome goes. She needed a
very small amount of oxygen and had
hypoglycemia. Annie could not take all of
her nutrition orally and so she had an NG tube
(nasal gastric tube), which was a tube that went
in through her nose down into her stomach. I
became skilled at its reinsertion, every 3 days.
We fed her expressed breast milk. Somehow,
we dealt with all of the issues. We knew that
with time Annie would take more feedings
orally and her need for oxygen would lessen,
and likely be eliminated completely.

We knew the first year would be rough.
Everyone pitched in. Our 12 year old son
took over the lawn maintenance and his
older sisters took on Annie’s developmental
progress and bought “mind stimulating” music
and ordered her a “Bumbo seat” to help develop
strength.

The whole family came together in ways that
I never dreamed possible. We discovered how
true our friends and family were by their support
and encouragement. Somehow, the homework
got done and the gang made it to their soccer
games.

At age 75 days, Annie smiled at us for the first
time. Even now, a year later, the memory of that
first and only smile causes me to cry.

Annie experienced respiratory distress at age
80 days and was transferred by ambulance to
the Children’s hospital. The physicians told us
she had pneumonia. Our beloved baby died less
than 24 hours later.

There are two ironies to this story.

The first is that we thought we had a choice of
life for Annie but the reality is that we did not.
The medical records, which we instinctively felt
compelled to obtain and have had reviewed,
reveal no signs of pneumonia. An effective
“Do not resuscitate” was ordered without our
knowledge or consent. The final computerized
medication report from the intensive care of
an excellent hospital is inexplicably missing.

The hospital issued a letter of apology stating
that sometimes “… communication does not
occur in as clear and consistent a fashion as we
would wish. For that, we are very sorry.” Recent
developments in medical science can be used to
diagnose and terminate certain lives but the
choice to use medicine to prolong these lives
doesn’t seem to be an option.

During her 80 days, our little Annie taught us
our greatest lessons in life. Through her life, we
experience the deepest sorrow and the most
intense love. She taught us the true meaning
and purpose of life and we are forever changed
as a family. Our children have learned that if
they are ever in need, their family will love them,
protect them and do anything to support them,
just like we did for Annie. They developed an
incredible empathy for the disabled and the
vulnerable.

The ultimate irony is that this little girl who
seemed so broken, flawed and seemingly
without purpose or value, was in fact, perfect
after all.

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