June 2009
The Newsletter of ROPARD
Timely Clinical Management Yields Good Vision
in Retinopathy of Prematurity

Late Complications of Retinopathy of Prematurity

While the incidence of retinopathy of
prematurity over the last twenty years
is fairly fl at, severe ROP has become
more common in recent years. This is
at least partly a consequence of the fact
that ROP occurs in smaller and younger
infants.
Globally, the leading causes of visual
impairment include nutritional (vitamin
A defi ciency) and infectious (measles,
ophthalmia neonatorum) causes. In
Latin America, Asia and Eastern Europe
where advanced neonatal intensive
care is available, infant survival is higher
resulting in a population of infants at
risk for retinopathy of prematurity.
ROP is here to stay, and with it
adult retinopathy of prematurity as
formerly premature infants survive into
adulthood.
Prior to the 1940s, retinopathy of
prematurity was essentially unknown
due to the limited survival of premature
infants. Prior to the 1980s there
was no standardized treatment for
retinopathy of prematurity. Infants born
in this generation, therefore, generally
did not have any treatment for ROP.
This treatment, whether delivered
by cryotherapy or laser, consists of
destruction of the peripheral retina.
Absent treatment, what took place was
the natural “auto involution” of the
proliferation which characterizes ROP.

Conversely, children born in the era of
the CRYO-ROP study (1980s) or later,
underwent procedures whereby the
peripheral non-vascularized retina was
destroyed in the interest of preserving
central vision. This newer generation of
infants – though they have the benefi t of
treatment for retinopathy of prematurity
– tended to be smaller and sicker,
often with other prematurity-related
problems such as lung disease, intracranial
hemorrhage and the like.
Formerly premature adults with ROP
are susceptible to ocular problems apart
from ROP. Cataract and glaucoma are
two examples of eye pathologies more
commonly seen in formerly premature
adults than adults who were not
premature.

From the retinal perspective, formerly premature adults
who had retinopathy of prematurity are more prone
to retinal detachment and changes in the peripheral
retina which can predispose to retinal detachment.
Furthermore, they can be a bit more challenging to
fi x. Retinal detachment repair is successful in adults
who were not formerly premature on the order of 90
percent of the time with a single operation. Conversely,
formerly premature adults who had retinopathy of
prematurity who go on to develop retinal detachment
are successfully repaired in a single operation in
approximately 10 to 15 percent of the time.
ROP is here to stay as new “waves” of ROP arise in
countries where neonatal intensive care services are
newly available. There are two different generations of
retinopathy of prematurity – those prior to the 1980s
who were untreated, and those born since who were
likely to have been treated. Ocular complications
occur in those who were formerly premature beyond
the “acute ROP” seen in infants. In this sense, a child
born prematurely is forever premature with regard
to the impact of prematurity on the ocular structures.
Formerly premature individuals should be diligently
monitored for cataract, glaucoma, and retinal problems
throughout their lives in order to maximize the
likelihood of maintaining optimal vision.

Sixth Children’s Vision Award

The recipient of the sixth Children’s Vision
Award will be honored on Saturday May 8,
2010 at the Detroit Institute of Arts, Detroit,
Michigan. Mark your calendar and plan to
attend the Children’s Vision Award ceremony.

Eric Cook, A Futuristic Designer

Eric Cook views the world with an unquenchable
curiosity and a lively sense of humor. It was not
always so easy. Born prematurely to Bud and Cathy
Cook, in 1982, Eric weighed only 1½ pounds at birth.

He spent the next six months in Children’s Hospital in
Detroit where his eye development was monitored.
The years that followed were a challenge for the family.
Eric’s premature birth affected his ability to eat, breathe,
speak, and his fi ne motor skills. It wasn’t until he was
about three years old, and he discovered the salt on
a corn chip, that he began to eat on his own. At four
years old, he donned glasses to correct a lazy eye.
Speech was also diffi cult for him.

When Eric entered kindergarten, he spoke only with
vowels, causing a communication impasse with his
peers and teachers. However, by second grade, he
was speaking with more fl uency and being understood.
Because of his speech impediment, Eric was viewed by
his teachers as ‘slow’, his peers as ‘different’ and treated
as such. In addition, at the age of 11, he was diagnosed
with Crohn’s Disease. In sixth grade, Eric developed
his interest in art and, and his work was hung in a local
art show. His favorite medium is pencil and paper and
refl ects an interest in futuristic creatures and designs.
With stubbornness and perseverance, Eric graduated
from 12th grade with good marks and an enduring
interest in archeology and mythology.

Three years ago, the vision in Eric’s right eye ‘went
dark’. On examination, a detached retina was
discovered, which was subsequently reattached. Since
that visit, Eric has been treated for glaucoma and a
cataract in his right eye. Presently, his left eye, which
has a cataract developing, presents a blurry image.
Despite all of these problems, Eric is a voracious
reader—often tackling an encyclopedia volume for light
reading. In addition to drawing, writing fantasy fi ction
occupies his time. He loves to travel and when possible,
he and his parents attend conventions for futurist toy
collectors where he promotes his designs. Having
developed the strength to deal with many diffi cult
situations, Eric lives with an upbeat and positive attitude.

Sarah Blake

Sarah was diagnosed
with ROP (then called
retrolental fi broplasia) at
fi ve months old. Now
37, she has undergone
six surgeries on her right
eye. These have helped
to maintain some useful
vision, although her vision
has diminished over time.
For Sarah, it is important
that a doctor be honest and have a positive attitude about
blindness. From a young age, she has been prepared for
the possibility that she will lose her vision.
Sarah learned both print and Braille. Because it had to be
large size, print was impractical for schoolwork. By junior
high, she was using Braille exclusively. She also learned
how to use a white cane and was trained with a guide
dog. She now has her fourth dog, Loretta. In elementary
school, Sarah received services in a resource room and
later from an itinerant teacher of the visually impaired.
During high school, she took full course loads without
direct services. At college she took full course loads that
often required creative solutions to meet her needs.

Sarah studied music, business and Christian ministries in
her fi rst two undergraduate years. Although today more
resources are available for music students, when Sarah
wrote a music theory exam, she had to play the answers
on the piano instead of writing them in music notation.
She eventually majored in psychology and minored in
special education. Linguistics was a main interest, but
there was no Braille representation of the International
Phonetic Alphabet. After four semesters of Spanish
using Braille textbooks, her study was stalled by a lack of
accessible textbooks.

After graduation, Sarah’s search for full-time employment
was long and unfruitful, though she did hold several parttime
and freelance jobs. For three years she worked in
the child care ministry for a local church and as technical
writer with a manufacturer of computer products for people 
with disabilities. Ultimately, she decided that she
needed to return to school.

In 2006, Sarah began graduate studies in theology. This
included Hebrew; her knowledge of computer software
was useful to confi gure her computer to display Hebrew
in Braille. She has completed two years of Hebrew
study and one year of Greek with plans for a second
year of Greek and a job as a teaching assistant. She will
graduate with professional distinction in Hebrew.
In the mid-1990s, a Braille version of the International
Phonetic Alphabet was developed. A blind person
can now study linguistics. Advancements in computer
technology make it possible to develop new Braille
systems for languages that do not currently have them.
In the future, Sarah’s plans include making Braille
available in more languages, some public speaking and
writing. She hopes to take a doctoral program in Near
Eastern languages, including biblical studies and related
literature and that her work will eventually include
other ancient literature. Her objective is to make the
world of classics and biblical studies more accessible to
people who are blind.

“I am often amazed at the changes in technology that
have taken place during my lifetime,” says Sarah. “I am
old enough to remember attending college without the
benefi t of much technology—I hired students to read
for me during my fi rst few years and often suffered
poor grades due to fi nding readers late in the semester.
I have not used a reader for any of my seminary
coursework, including exams! Everything can now be
done on computers. It is a truly amazing time to be
alive.”

THE ASSOCIATION FOR RETINOPATHY OF
PREMATURITY AND RELATED DISEASES
Board of Directors
John Baker, M.D.
Margaret Cooney Casey
Patrick J. Droste, M.D.
Philip Hessburg, M.D.
David S. Hooker
Leslie Hooker
Jeffrey Maisels, M.D.
Raymond Margherio, M.D.
(1939-2000)
Rita Margherio
Thomas McAskin
Kay White Meyer
Edward O’Malley, M.D.
Venkat Reddy, Ph.D.
Caron Trese
Lori Webb
George A. Williams, M.D.
Kimberly Williams
Paul R. Ziegler
Michael Trese, M.D.
Co-Medical Director
Antonio Capone, Jr., M.D.
Co-Medical Director
Susan Campbell
Administrative Director
Paula Korelitz
Outreach Director
Children's Low Vision Resource Center
By Appointment Only
Paula Korelitz
Outreach Director
Rosemary Blaszkiewicz
Parent Advisor
4064C W. 13 Mile Road
Royal Oak, Michigan 48073
1-800-788-2020
ropard@yahoo.com

Susan Campbell,
Editor
Paula Korelitz,
Website Administrator
Should you have any
questions regarding
this issue, please
contact ROPARD at
1-800-788-2020
or visit our website at
http://www.ropard.org
or e-mail us at
ropard@yahoo.com