My
name is Shawn Rohe. I joined Partners in Policymaking for both personal & professional reasons.
In order for you to fully understand my project…I have a story to share.
In July of 2009, at 11 weeks gestational
age, our unborn baby received a pre-natal diagnosis of a cystic hygroma.
The
over-seeing physician informed us that was indicative of a chromosomal
abnormality and/or a heart defect. He
strongly urged us to have an amniocentesis performed to rule out a chromosomal
defect. After meeting with a genetic
counselor and reviewing the risks of an amnio, which was a 1 in 200 chance of
miscarriage, we decided it wasn’t worth it.
We’d barely survived the heartbreak of 4 miscarriages prior to being
blessed with our 1st daughter, Hannah.
The potential of losing
another baby, all for the results of a pre-natal diagnosis…a diagnosis that was
not going to change the outcome of our pregnancy was not something we were
wiling to jeopardize. This little being had surpassed the 10th week,
surviving longer than any of her angel sisters and brother…it was obvious he or
she had intense strength and determination.
In September 2009 we found out we were
having a girl!!
And it was confirmed that
she indeed had a heart defect. After
dozens of ultrasounds and fetal echocardiograms, it was determined that baby
girl had a complete AV canal defect, which meant she had a full combination of
defects that would require surgery, after birth.
At
this point we knew very little about what to expect after her birth. I wondered:
- What was the
survival rate for this type of surgery?
- Will she be
transported directly to AI immediately after birth?
- Will I get the
opportunity to hold or even see her?
·
We
spent the next 4 months meeting with a handful of new doctors, from perinatologists
to cardiac surgeons. They all asked the
same question “Why did you decline an amnio?”
We were consistent with our response of
“The results would not have
changed the outcome of this pregnancy. So
why risk the chance of having a miscarriage?
Plus, heart conditions run in the family”.
The day finally came, January 28th,
we were finally going to meet our 2nd child. Not knowing how she would fair outside of the
womb, our excitement had a head on collision with trepidation. At twelve in the afternoon Natalie Rose was born and whisked away to a room adjacent to mine to be assessed by the NICU
team. After what felt like an eternity,
my husband walks over to me with a swaddled bundle; only her cherub little face
sticking out.
Drinking in her adorable
features I began to notice Natalie had distinct characteristics. In that moment, I knew she had Down syndrome. While my initial reaction was fear and panic,
I flashed back to our meeting with her cardiac surgeon, when he said “the
survival rate for this type of open heart surgery is higher if the child has
Down syndrome.”
Although those words
were comforting it did not remove all of my anxieties and concerns. That evening I sobbed as I held her for the 1st
time, feeling as if she wasn’t mine to keep…as if she were on loan from heaven.
Natalie’s first month of life outside of
the womb was met with two NICU admissions
·
a bad case of
jaundice
·
a diagnosis of
failure to thrive
·
a feeding tube
·
and a week long
stay on the cardiac unit at AI DuPont hospital for children
Exactly 4 weeks to the day that Natalie was born, we
had our first meeting with a Child Development Watch service coordinator. As Jude came into our home, she was met with
two parents who looked like deer caught in headlights. My husband, myself, and Jude sat around our
dining room table as we reviewed our welcome packet from Child Development Watch and collaboratively
filled out Natalie’s IFSP. No matter
how hard we tried, Ben and I could barely focus on the information being
presented or expected of us, as we stare cautiously at a gray and dismal
28-day-old Natalie. Suffice it to say,
as Jude left our house that afternoon, the packet of information she had just
reviewed with us was literally tossed into the growing stack of information we
were being overwhelmed with.
A mere 20
days after that meeting, Natalie was rushed from her pediatrician’s office to AI Children's Hospital via ambulance. As it turned out, Natalie
contracted a respiratory virus that was putting a strain on her already
failing heart. At this point it became a
matter of assisting her medically as much as possible.
We needed to keep
Natalie stable, allowing her to recover from the virus so we could proceed with
her open-heart surgery.
One month from that frightening day, Ben
and I were in awe. We were finally taking home a happy, heart-healthy little
girl. Natalie was ours…to keep.
Slowly but surely, I began sifting through the
pile of information that had been tossed aside during those challenging first
few months of Natalie’s life.
As I leafed through the Child Development Watch packet, I didn’t
find much of it intriguing…nothing really stood out. I saw a pamphlet labeled “It’s Time to
Transition. At Age 3, Things
Change!” I thought to myself, This is GREAT! Natalie’s not
even 1, so I can put this
off for another 2 years!!
Two
months later I received a flyer in the mail from Child Development Watch in regards to there Family
Forum Meeting. Low and behold, it was about
transitioning from the Birth-to-Three program to the Preschool program. I registered right away and
gave myself a big pat on the back. I thought
I was being a gold star parent by attending that meeting when my little one was
only 13 months old. I entered the forum
with my head held high…proud of myself for being ahead of the game. I left the meeting feeling deflated and
blind-sided. There was so much to the
transition process that I did not know.
How could I have missed the importance of preparing for this transition
from the very beginning?? I had beat
myself up over that question for the longest time. Until it dawned on me that during the time
frame we were provided with that information, our minds were otherwise
occupied.
I’ve
made it my mission to design a magnetic checklist to be handed out in the CDW
welcome packet. The service watch
coordinator can review the checklist with the parents or guardian and it will
be designed to ensure they are prepared for the transition process. It is my hope that the key information will
be in the forefront of the parents mind and with it’s magnetic powers, it will
remain in a visible location
·
Possibly the
fridge
·
Or the family’s
communication board
and won’t be tossed aside into the dreaded
information overload pile. Creating a
less stressful…less overwhelming process, for all.
