Getting to know our girls

Published on: March 01, 2005

Nine
years ago, I was six months' pregnant with twins when my husband and I
learned that the babies had mysteriously stopped growing. I was in the
hospital on bed rest within hours. Around the clock, nurses monitored
their fetal heartbeats.

Under these
circumstances, we made our first acquaintance with Baby B, whom we
later named Maria. One night, as the monitor found and repeatedly lost
track of her heartbeat, doctors ordered an ultrasound and discovered
baby Maria, busy doing back flips in her amniotic bath. At first
glimpse, and ever since, Maria has been someone you feel you know just
by looking at her. We did not see the other twin, Baby A, that night,
and as it turned out Michaela remained somewhat elusive for a long time
after.

My husband Michael and our son Benjamin spent evenings with me at the
hospital. I think it helped that Benjamin's 2-year-old mind could not
share in what was happening. When he was with us, we returned to the
simplicity and contentment of his first two years. The rest of the
time, we were full of apprehension about what the future would bring.

On the morning of June 1, at seven months gestation, the doctors
decided that it was time for our twins to be delivered. Over the
previous month it had become clear that keeping the babies inside
carried one set of risks, while delivering them carried another. The
doctors had decided that the relative risks now favored delivery.

We knew that the babies would be terribly small and fragile, and
because of this, the delivery was by Caesarian section. The obstetrical
team set to work, and two teams stood by to resuscitate if needed.
Michael looked on, but surgical drapes blocked my view.

Very soon, cries rang out, and Michael called to me, "She's pink!" As I
realized this meant that the baby could breathe, I cried too, with
relief. When the second set of cries sounded from Baby B, I almost
laughed. It was astonishing that these babies -- 11/2 pounds apiece --
had arrived with any of the normal fanfare. But they had.

The days, months and even years that followed were anything but normal,
though. Not having been one to push myself to the utmost before, I
believe that my former self was stretched and challenged in so many
ways that I became, somehow, a different person.

Within the first three days of their lives, both girls underwent major
surgeries. Maria's colon was insufficiently developed, causing
intestinal obstruction. She required a colostomy. Michaela's esophagus
was not complete -- there was no passageway between her mouth and her
stomach. She required a gastrostomy so that she could be fed directly
into her stomach. She also needed frequent suctioning of her incomplete
esophageal pocket to keep the saliva she swallowed from overflowing
into her airway.

Stunned and exhausted, we became very familiar with the neonatal
intensive care unit. Maria stayed in the NICU two months before coming
home, still tiny at 3 pounds. Michaela stayed for six months until her
esophagus was surgically repaired. Then she, too, finally came home.

Once Michaela joined us, the medical aspects of our situation
retreated, and the therapy phase began. The girls qualified for early
intervention services from physical therapists, occupational therapists
and speech therapists to address their developmental needs. At six
months, neither was making normal progress toward sitting or crawling.
Michaela, with her esophagus repaired, could only now begin the process
of learning to eat.

At the beginning, and many times over the years, we've found therapists
to be our closest and most helpful allies in working for the well-being
of our daughters. Therapists have contributed to the girls' growth, but
they have been equally important to ours. In a world that does not
always notice people with special needs, therapists choose to believe
that these children have possibilities that are worth nurturing. As
parents, we must come to believe the same.

During this period, a neurologist determined that Maria's and
Michaela's motor delays were caused by a developmental anomaly called
cerebellar hypoplasia, and not by their birth histories as an earlier
doctor had insisted. In addition to their other anatomical anomalies,
the girls' cerebellums had not developed correctly and remained small.
Healthy cerebellums give us good coordination and balance; the girls'
poorly developed cerebellums leave them with ataxic movements that are
jerky and uncontrolled, and balance that is uncertain.

When the girls reached 3 years of age, Maria walked with a walker,
Michaela had a wheelchair, and neither girl had the oral-motor control
needed for speech. Both were eligible for special education preschool
placements. They entered the public school system, and the advocacy
stage of our lives began.

Advocacy has been the most difficult and disappointing portion of our
journey. Federal and state law mandate free and appropriate public
education for children with disabilities. But in our experience, it is
only through persistent advocacy that our daughters have received
placements well-suited to their educational needs and readiness -- and
then, only for a few years at a time.

When parents feel they must become advocates to ensure appropriate
educational opportunities for their children, they add a stressful and
demanding job to their already significant responsibilities. Following
a long and sadly unproductive advocacy effort on behalf of our
daughters and other students, we've put advocacy aside. We will put our
efforts, instead, into teaching our daughters at home.

Maria and Michaela's physical disabilities will remain part of them.
However, their participation in the world around them increases with
each advance in their abilities. With her recent ability to use a
walker, Michaela has gained free and independent movement, and even the
possibility of adventure.

From our perspective as parents, the ability to speak has been the most
important change in our girls. Maria's speech has emerged over the past
three years. At this point, if she is with someone who knows her well
and she feels confident that she will be understood, Maria expresses
her thoughts with impressive quickness, clarity and verve.

Michaela's speech has emerged only this past year. As her brother and
sister compete for the floor, she shouts, "I'M TALKING! LISTEN TO ME!"
It's actually a pleasure to hear her join these sibling squabbles. But
the greatest pleasure of all has been the deeper understanding and
appreciation of Michaela -- the nearness and closeness to her -- that
her language has given us.

Julie Nikaitani lives in Seattle with husband Michael McCarthy and their three children.

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