by Richard Edfeldt
Today is the 26th birthday of Jacob and as you
would expect, it unleashes a flood of emotions (literally) and a host of
memories of that significant day. Here are a few:
Karen and I were aware of Jacob’s fatal heart defect
(hypoplastic left heart syndrome or HLHS) for several months before he was due.
We had to endure months of hearing what were our options were (A. an abortion,
B. do nothing, C. move to California and hope for a heart transplant [human or
baboon], or D. palliative surgery only done in Philadelphia). Added to the oppressive weight of this
decision was the impact this decision would have on our other two children and
the financial ramifications of it all.
What helped us cinch our decision came through an appointment
with a fetal echocardiologist in Houston who became a trusted friend. Doctor
Jim Huhta was at Texas Children’s Hospital at the time and we were sent to him
to confirm the diagnosis we had received from Karen’s doctor. After he performed the procedure and, indeed,
confirmed that dreaded diagnosis, Karen asked him this question, “What would
you do if this was your child?” He tried
giving the expected answer of saying he couldn’t say and that it was our
decision to make. But Karen would have none of that and pushed him for his real
response. Finally he took a deep breath and gave his answer. And his answer became the driving force in our
decision making and care for Jacob throughout his life – he said, “I would do
all I can within my power to provide a chance for life for him.” Doctor Huhta then went on to explain that he
had just accepted a new position on staff at Children’s Hospital of
Philadelphia (CHOP) to work with the world renowned surgeon, Dr. William
Norwood, who had pioneered a series of palliative surgeries for HLHS that
showed a lot of promise.
On March 8th, we said our tearful good-byes to Ben and Katie
and to my parents (who had come to take care of them) and boarded the airplane
headed for Philadelphia. Normally,
starting a trip that would end in a birth of a child would be surrounded by
excitement and joyful anticipation. To be sure, we were excited that we were
close to the birthday of our third child and had already carefully chosen his
name – Jacob Blackburn Edfeldt. But
there was also a heavy cloud of dread of the vast unknown as to what we would be facing. Would we be coming
home with happy hearts as we held an infant … or with a crushed soul
accompanying a casket? |
| Philadelphia's Ronald McDonald House |
We had been in contact with the Ronald McDonald House in Philadelphia
(the original one!) and had a room reserved for us. We landed in Philadelphia
and took a taxi to the beautiful house. We met with the RMH staff and they gave
us the tour and explained the rules of the house. Once we settled in, we faced
the decision to find a place to eat.
There were several restaurant choices down the street a few blocks. So we
began to walk down the street in silence, lost in our fears and neither wanting
to make the decision as to where to eat.
We turned a corner when we saw it. Here we were, two scared young adults from
Texas struggling with making our way around the foreign land of Philadelphia
and grappling with the reason why we were there. But the decision of where to
eat was made for us in an instant. There was Chili’s, specializing in Tex/Mex
food! It was like saying, ‘You’re not in a foreign land after all. Here is a
little bit of home for you.’ We went in and had our fill of chips and salsa and
ordered up fajitas for two. Except for
having to ask for ice in our tea, we felt like we were back home, at least for
a few minutes.
 |
| Karen and Jacob at birth |
The next days were filled with meetings and preparation for
Jacob’s delivery and the first of three open heart surgeries. And then Friday,
March 11th, arrived and so did Jacob via C-section! Karen and I were able to see Jacob for a few
seconds after his delivery in the University of Pennsylvania hospital before
they carted him off through a series of tunnels to nearby Children’s Hospital
of Pennsylvania.
The following Tuesday, Karen and I experienced the first of many
times when we walked by the gurney wheeling Jacob into the surgical room;
pausing long enough to give him a kiss and pushing the terrible thought away if
it would be the last kiss.
On that day, they performed the first of what became many
open heart surgeries in Jacob’s life and the relief and thanksgiving when told
he came through surgery just fine. I
remembered distinctly how cold Jacob’s body was when they brought him out into
the hallway, due to him being packed in ice throughout surgery. How thankful we were that they had prepared
us for that eerie tactile sensation. We
often joked with Jacob about being so hot natured was a result of those ice
baths.
 |
| Leaving Chop |
Over the following weeks, other memories were made:
- The Polaroid pictures of Jacob Karen had taped to her hospital bed
- Long days sitting and holding him in PICU
- Long nights trying to sleep at RMH while thoughts pestered you about what the next day might bring
- Cold and snowy days in the northeast for a couple born and raised in the south
- Ordering real Philly cheesesteaks from trucks parked outside of the hospital (imagine a ‘wattayahav, wattayahav, wattayahav’ with a major attitude!)
- Daily mile long walks to and from Ronald McDonald House to CHOP through the campus of University of Pennsylvania (a beautiful campus)
- Pushing Karen in a wheelchair from RMH to CHOP up and over a bridge and on that same mile long walk through the university. Unfortunately it was across a brick walkway (no way to soften the jarring of each brick for Karen who was recovering from her own surgery no matter how hard she hugged that pillow)
- Enjoying meals made by volunteers at the RMH
- The conversations and comparing notes with other RMH parents
 |
| Back in Houston |
And
the best day … the day we flew home with a three week old infant! He may have a little blue in his skin color
due to mixing of his blood as a result of this ingenious surgery by Dr.
Norwood, but he was alive! And he was coming HOME!
 |
| Finally Home |
And
being greeted by the best welcome home party in the world being comprised of an
8 year old boy and his 2 ½ year old sister ready to meet their new little
brother, Jacob, and begin their next stage of life as a family.
That’s
how Jacob’s journey began 26 years ago …. and what an extraordinary journey it has
been!
 |
| Family Dedication 1988 |
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