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.