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Hannah's Story
Hannah was born on May 20, 1998. In the final weeks of what had otherwise
been a normal pregnancy, I noticed a change in fetal activity. My physician
ordered non-stress tests twice a week until I delivered as a precaution.
The tests were all reactive, much to our relief until the 39th week. That
particular day, the test was considered to be "non-reactive" and many of the
fears that I had had throughout my pregnancy seemed to be becoming our
reality. Since the heart rate and other vitals were OK, my physician
decided that given the fact that we were so close to my due date he would
induce labor the following morning.
The induction was successful and Hannah Grace was born at 11:15 a.m. on May
20, 1998. She was not able to clear her airway after delivery and needed
some assistance to breath. With a little encouragement, she started to
breath on her own and was taken to the nursery where they could provide
oxygen for her. My physician returned a few mintues later to report that
she was breathing very well and was maintaining good levels of oxygenation.
With my permission, he wanted to start an IV for fluids, again as a
precaution, fearing that the exertion of nursing may be too much for her.
In starting the IV, they discovered she had a cleft palate. Since her cleft
involved the hard and soft palate, but not her lip, it was not immediately
obvious. More phone calls and he found us a doctor that he believed was the
"go to guy" for clefts. This physician, at Minneapolis Children's requested
immediate transfer and she was then taken by helicopter to the NICU.
Our stay there brought us news that would change our lives forever. During
her 8 day stay, we learned that Hannah had a chromosome disorder. The
particular disorder she has, Ring 18, is rare and many of her physicians had
not actually treated another patient with this syndrome and very little is
known about it. Lucky for us, both the cleft specialist and the
neonatologist we were working with took that to mean that until Hannah
proved that she could not do something, we had to assume that she could and
therefore all necessary treatment would be provided for her. A battery of
tests were done to check the function of her major organ systems and they
all seemed fine. It did not take long though for us to encounter physicians
that had a very different outlook on the best course for Hannah.
On the very day that we were planning to take her home, an eye doctor came
in to do an exam and while giving instructions to the nurse that was
assisting him, he commented on what a waste of time this was as "this kid's
not ever leaving here alive". Unfortunately, we've encountered several
physicians with this same attitude about her care. The good news is that
our family physician, the neonatologist and the cleft specialist were on our
side and helped us to put together a network of doctors that were not only
willing to work with us, but are outstanding in their respective fields.
One of my greatest moments occurred when I took Hannah for a check-up with
her cleft doctor. He had a medical student working with him that day.
Before entering the room I heard him tell the student that this next patient
was a very special little girl. When they came in the room, Hannah smiled,
he has always been one of her favorite people. The doctor then turned to
the student and said: "My colleagues told me not to waste my time on her,
she wouldn't amount to a hill of beans. Now, isn't that the prettiest hill
of beans you've ever seen? Don't ever let a child's future hinge on a
single test. You don't know what you could be missing."
Today, Hannah is 7 years old and continuing to make progress everyday. Her
cleft palate has been repaired, a problem with her feet corrected and she
has undergone 11 other surgeries for various reasons, most of them minor and
related to ear problems resulting from the cleft. Our child who "would
never to anything but lay there" is walking independently. She is learning
more everyday and is doing very well in school, communicating through
assistive devices such as switches. She knows what she likes and does not,
she knows people and she has quite a personality!! She does require
assistance to complete many of her daily cares, but she does participate and
she is a joy to be around. She is a very determined little girl and it shows
as she never gives up on her therapy, working hard every time. We could
have listened to those doctors that told us to leave her alone and let her
die but we chose not to. Instead, we surrounded ourselves with
professionals with the same goals for her that we have, people who are
willing to fight for her and I would never give that up. Further, we have
learned a lot about life through her eyes. We have learned to be thankful
for the little things in life and we find a lot more joy in all of our
children's developmental milestones because we know that each one is a
blessing and not something to be taken for granted. We are truly blessed to
have Hannah in our lives!
Back to Rare Trisomies and Rings Stories
-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.
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