A very small beginning:
UIHC team helps parents through the highs and lows
of
premature birth
Patient 15 arrived 16 weeks early. She struggled
to breathe through underdeveloped lungs. The gentlest
touch could rub her paper-thin skin right off. Her
mother’s rings could fit over her delicate
legs. Her family heard estimates that she had only
about a tablespoon of blood coursing through her
veins.
Even with her tiny, pastel-striped knit cap on and
a maze of tubes assisting her bodily functions, she
weighed only 13 ounces.
Two months after her arrival at University of Iowa
Hospitals and Clinics, with the equipment assisting
her breathing removed, her parents finally heard
her first triumphant cry.
Five years later Anna Marie Michelsen is a tall
and slender prekindergartener, playing T-ball and
flipping around in gymnastics. You’d never
know her survival was one for the records.
Anna is patient 15 on the Tiniest Babies Registry,
a web site (www.medicine.uiowa.edu/tiniestbabies)
that lists the world’s smallest surviving babies.
Edward Bell, professor of pediatrics and director
of the Neonatal Intensive Care Unit (NICU) at Children’s
Hospital of Iowa, developed the registry in 1999
to track infants born weighing less than 400 grams
(14 ounces).
“We hope to gather data on the long-term outcomes,
the overall health, growth, and development of these
infants,” Bell says. “We’re getting
better at knowing what to do to save smaller babies.
We know that some of the smallest can survive, so
we do try to treat them.”
A variety of medical conditions and complications
can cause premature birth, although in many cases
the cause is never known. The earliest birth recorded—of
the 52 tiniest babies on the registry—is 1936
in Chicago. The youngest gestational age is 23 weeks
(compared to 40 in an average, full-term pregnancy).
Bell relies on physicians and parents worldwide
to add entries. Infants listed in the registry include
those reported in the lay media as well as in medical
journals.
Gestational age, rather than birth weight, is more
important in a premature baby’s prognosis,
Bell notes. The higher the gestational age, the more
developed the child’s organs are likely to
be.
Once preterm babies are born, the medical team tries
to quickly and efficiently replace the support normally
provided by the mother’s uterus and placenta.
Doctors and nurses work to keep the babies warm,
help them breathe, protect them against infection,
and feed supplemental sugar, amino acids, vitamins,
and minerals straight into their veins.
The University has one of the best success rates
around. Surviving babies under 500 grams, or about
1 pound 2 ounces, are rare; UIHC has had 28 survivors
below 500 grams, which Bell says is a lot more than
most hospitals have encountered. A national organization
that compares the outcomes of premature babies consistently
ranks UIHC in the top 10 percent for successes.
But Bell is careful not to hype what, to many, seem
like miracles.
“It’s important to remember that we’re
not trying to spur competition with this registry.
I don’t think anyone would consider it a triumph
to save the world’s smallest baby, given the
problems he or she may face,” Bell says.
Kim Michelsen and her husband David, of Waterloo,
recall the struggles—spending every hour of
every day and night in the NICU, watching monitors,
singing and reading stories to Anna or to a tape
recorder so a familiar voice would be nearby at all
times. The hospital staff became their educators
and heroes. And in the four months Anna lived at
the hospital, they became part of the Michelsen family.
“The way they work with these babies, you
can tell they truly love their jobs. When I was having
a rough day, they’d put their arms around me
and remind me that it’s just one day and that
the next would be better.
“They were so positive and uplifting at such
a tough time, and I thank them to this day for that,” she
says. “We visit once a year, and I send postcards,
holiday cards, pictures, and on Anna’s birthday,
I send a thank-you note.
“She wouldn’t be here without them.
I owe them her life.”
For NICU staff members, that continued contact can
be one of the greatest rewards.
Stephanie Stewart, NICU nurse manager, received
a visit last year from a teenage girl who was one
of the first tiny babies Stewart worked with in her
nursing career.
“To see this healthy, strong, vibrant young
woman standing there, when at times 14 years ago
we didn’t know if she was going to make it
or what kinds of difficulties she might have, was
so amazing,” Stewart says.
“There’s always lots of hope and awe
and wonder, even though we work with it and see it
every day,” she says.
Bell admits that not all the stories end happily.
People ask him how he can stand to work with the
smallest and sickest babies and to be around so much
pain and death.
“I tell them that sometimes it’s the
families of the ones who are lost that you can help
the most, helping them understand what happened and
cope afterward.”
Brighter endings, like many of those in the Tiniest
Babies Registry, inspire the medical staff to continue
the fight.
Tami Barrett started as an NICU nurse at Iowa in
1981 and spent 18 years in nursing before becoming
coordinator of family-centered care at Children’s
Hospital of Iowa. She realizes that there are limits
to knowledge and technology, but she also points
out that when she began her career, babies at 27
weeks or earlier rarely survived. Now, the limit
of survival is about 23 weeks.
“If we can help a baby survive, we become
a tiny speck on their continuum of life,” Barrett
says. “They have many years ahead to live and
have a family and make a positive impact on society.
“And we were a part of that.”
by Amy Schoon
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