OPD Syndrome
Family Resource Network


Joseph was born in a US hospital in Germany in October of 1989. His
diagnosis was a surprise for us, but came just a couple of days after his
birth. When he was a week old, we moved to San Antonio, Texas to get
Joseph the medical care he needed. He had a cleft palate and his mouth was
too small for him to nurse but we found creative solutions to help him eat.

Within 6 weeks, he was diagnosed with Hydrocephalus and we were told he
needed a shunt to drain the fluid in his ventricles.  Due to his small mouth
and cleft palate, they were unable to safely intubate Joseph and he was
given a tracheostomy. He then became very ill from RSV (a respiratory
virus) and we almost lost him, but he proved to be a fighter and he sailed
through the shunt surgery just a few weeks later. In late January 1990, he
finally came home (he'd had a few short visits in the interim).

Joseph needed constant around the clock care but our insurance only
provided 12 hours of nursing care for several months. We used the nurses
during the day while we worked but then my husband and I alternated
nights on who had to get up frequently throughout the night to feed and
suction him. Sleep deprivation was the name of the game for two years.  
Joseph would frequently vomit his feedings, often because he'd gag if we
suctioned his trach too hard.  During his subsequent hospitalizations, we'd
always have trouble convincing the nurses that quick passes with the
suction catheter helped minimize the vomiting. They always wanted to do
some serious "Vacuuming".  It was amazing how many times the medical
professionals don't believe the parent until they have been vomited on. We
learned to cope and to watch for "that look" on his face that said, "grab a
large napkin NOW mom."

Truly a blessing to our family, Joseph has always been loving and
intelligent. He has endured many surgeries from ear tubes to cleft palate
repair to VP shunt revision to spinal cord de-tethering.  He's always had a
positive attitude.  A bright young man, he reminds all of our many blessings
in our lives. He's adjusted to glasses, hearing aids, and an FM system.  
Joseph's experienced many changes as he's gone through his adolescent
growth spurt, especially scoliosis, kyphosis and pectus carinatum. These
have led to more surgery and the addition of a back brace for about 6
years to slow the curvature.

Most of his care has been with the military healthcare system, however,
the orthopedic specialists at Shriner's hospital in Philadelphia have been
the best-very family oriented care.  Joseph's Dad and I have always been
strong advocates for getting Joseph the care he needs with the least
amount of discomfort for him. While we've been pleased with most of the
care, we've also been very frustrated at times and have had to remind our
medical professionals that our son is not just another "educational
opportunity".

Joseph’s biggest challenge started in April 2009 when he was admitted
surgery to biopsy bone cysts on his forehead and to have a Le Forte III
procedure to move his midface forward.  During the surgery several
mistakes were made, to include slicing through his perfectly fine 19 year
old VP Shunt.  From there, everything went downhill and one surgery turned
into 19 surgeries, including having to have another trach.  After more than
three agonizing months in the hospital which included having to snatch him
from the jaws of death four times, Joseph went home only to go back two
separate occasions during the Summer of 2009.  He had to take a year off
from college and when he regained some strength, had more surgery to
remove the hardware in his face.  Finally, in May 2010 he got his trach out.

Joseph is currently 21, and a freshman at the University of Mary
Washington (UMW), looking at a possible major in psychology. His hobbies
are mostly aviation related, including taking photos and videos of airplanes.
He also enjoys playing Wii, his favorite games being the Madden NFL
series, and Wii Sports-mainly the baseball and bowling parts of that game.
He continues to enjoy music and playing percussion in the concert band at
UMW.

When I was updating this story, Joseph wrote this paragraph to tell us
what he has to say about being a young adult with challenges-

    “Despite my challenges I am still able to enjoy a lot of things, like   
playing Wii, watching football (Go Cowboys!), and surfing the Web, mainly
Facebook and YouTube. I also enjoy living on my own in the college
environment at Mary Washington. In June 2010 I attended the 20th annual
Children’s Craniofacial Association’s retreat in Boston. That was a lot of
fun and I got to meet other kids and adults with facial differences."

    "My advice for younger kids with disabilities and craniofacial
differences: Be yourself and don’t worry about what other people think. If
someone is making fun of you, you should try to be nice to that person. If
the teasing continues, then just walk away and tell someone, maybe a friend
or a trusted adult."

    "If someone is continuously being mean to you, don’t waste your time on
them. Stick with your friends and the bully should not bother you. Also, a
good way to make friends is simply by being kind to others.”

As a parent my advice is:  don’t give up.  I have my faith to turn to when
things are tough, it helps.  Get to know other parents of kids with special
needs to lean on each other and to share ideas.  When your child is ill or
undergoing surgery, your closest friends are helpful but sometimes don’t
get what it is like.  We’ve always treated Joseph the same as any of our
other children.  As soon as he was sufficiently recovered he was required
to help himself and to do chores like the rest of the family.  We are very
proud of our son.

Joseph and I welcome communication with other kids or parents.  

email:  (Cheryl.papciakbrooks@comcast.net)

Appreciate the miracles.  We do.
Joseph
Joey at four years old
Joey at 6 months
Joseph at 12 years
Joe 2011