Pictures of HOPE from LITTLE HEARTS of Connecticut
When our son, Jeffrey, was diagnosed with HLHS, we initially chose comfort
care and took him home to die. We were told that should he have the three
staged palliative open heart surgeries that the quality of life for these kids
was unknown, that he may be in and out of hospitals for the rest of his life,
and that the chances of him surviving all three surgeries was very low.
Jeffrey was home with us for six days after being diagnosed. That little
fighter kept waking up everyday with us. Since he could not nurse (because of
his heart made his very tired) I was feeding him milk with a medicine dropper
every hour on the hour.
That week at home waiting for Jeffrey to die was the worst week in our life.
Fortunately, we sought a second opinion and Jeffrey had the first of the three
surgeries when he was 18 days old at Children's Hospital of Boston.
On Jeffrey's first birthday, I would send his picture to all the Pediatric
Cardiologists here in my state. I wanted to show them there was hope for kids
with HLHS. I didn't want another couple to go through what we did. But
Jeffrey was only one face. I needed more.
At that time I only knew of two other families who had a child with HLHS.
However, someone knew someone else and within three weeks I had 10 families
willing to get together for the picture of HOPE.
On December 7, 1997, we met at a Chuck E Cheese in Massachusetts. We had 10
faces in a picture now, not just Jeffrey's. These parents came from MA, RI,
and Connecticut.
On May 24, 1998, we had another get together down the street from where I live
in Connecticut. This time we had 17 families joining us (would have had a lot
more had I chosen a weekend other than Memorial). They came from neighboring
states - VT, NH, NY, PA, MA, and RI!
Through LITTLE HEARTS (a support network for parents of children with CHD)
that I started this year, I have made over 400 reprints of these pictures and
have given them to Pediatric Cardiologists, OB/GYNs, High risk OB/GYNs,
Pediatricians, Social Workers and Nurses. This picture was intended for the
professionals to give them HOPE for HLHS, however, my biggest fan is the
parents themselves.
Most recently LITTLE HEARTS has turned both pictures into a poster and it now
hangs in Cardiology clinics, Hospitals, Pediatrician's waiting rooms, etc., in
not just Connecticut but in neighboring states with the help of the moms and
dads from the get togethers.
The next get together will be in the spring of 1999. Anyone looking for
reprints of HOPE, poster of HOPE or would be interested in joining us next
year, please email me at LENORE1231@aol.com. Together, we CAN make a
difference!
1999
