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October 9, 2017
Chair Huffman, Vice-Chair Gavarone, Ranking Member Antonio,
and Members of the Health Committee:
Thank you for allowing me to provide sponsor testimony on
House Bill 332, which would ensure that individuals with disabilities will not
be banned from an organ transplant waitlist solely based on their disability.
I was approached by Courtney Hansen after hearing of the
proposal of Ohio House Bill 332 and wanted to share our story and put a face
with the impact of this bill. We found
out that our unborn child would have Down syndrome in the spring of 2014. Suddenly, the hopes and dreams I had for my
child came crashing down around me. I
hadn’t had much interaction with anyone with Down syndrome in my personal life and honestly
didn’t see past that diagnosis at all. A
month later, we found out that our daughter, Ellie, also had a severe heart
defect that would require at least one open heart surgery to repair. I knew from the day of our diagnosis that I’d
have to become an advocate for our child – I had no idea that I would have to
advocate to show the world that her life was worth living.
Ellie arrived that September and was out to show the world
that impossible was nothing. She was
closely monitored from day one by her pediatrician and cardiologist. When Ellie was just two weeks old, she went
into heart failure. At one month old,
she was admitted for failure to thrive and congestive heart failure. Her battle had begun – as did ours. At two months old, we found out that Ellie’s
heart defects were more complex than we’d imagined and we tossed around the
idea of three surgeries now and a possible heart transplant in her future. The next month brought a trach and g tube,
several more tests, and a heart cath. By
Christmas, Ellie was spending her days in the Cardiac ICU and was only awake
for a few hours each day. She was in the
depths of heart failure. We prayed over
her every night, begging her to be here in the morning. She’d get another pep talk each morning,
begging her to power through so that Daddy could see her when he came back
after work. Every day was spent fighting
for her – making sure that there was a future for our daughter.
She was scheduled for her first open heart surgery on
December 31st. On the 28th, I came into
a meeting with her surgeon prepared with notes and questions and a plan. He told me that she was extraordinary, but in
the worst ways. Her little body likely
wouldn’t make it out of the OR. His
words were, “the risks here are steep – the chance of mortality is quite high
for her”. He explained the surgery and
what he’d be doing. He’d be placing a
band around her pulmonary arteries to try to prevent permanent damage to her
lungs. He wouldn’t be able to do more
right now because of the risks revealed in her heart cath. I looked down at my list of questions… none
of which were relevant anymore. I asked
about future surgeries, he said that unless this first surgery was wildly
successful, which was doubtful, he wouldn’t be able to do step 2 or step 3 in
her repair. I said, “Okay, then she can
have a transplant.”
“No,” he said, “she wouldn’t be eligible for a transplant,
because she has Down syndrome and a host of other complications.” She would likely be sent home to live out the
remainder of her short life with the broken heart she had.
The depths of my soul pooled out of me and gathered like a
puddle on the floor. How could her life
not be worth saving? How could her
future not be worth exploring every option?
What in the world does having Down syndrome have to do with access to a
transplant?
To his surprise, Ellie pulled through her first heart
surgery like a champ. She was given a
few months of extra time. It was now up
to us to figure out a way to get Ellie the surgery that she needed to move
forward – a surgery with a future and a life.
We looked into pediatric cardiothoracic programs across the
country. We had others refer us to
Boston.
When we were finally discharged after four months inpatient,
we went to see our cardiologist right away.
She helped us gather our files and test results and she got her foot in
the door at Boston Children’s Hospital.
Ellie would undergo her second open heart surgery just two months
later. At the time of her second heart
surgery, Ellie was again in the hollows of heart failure – ventilator
dependent, fed strictly by her g tube, and spending her days sleeping and
sweating. The surgeon went in and used
part of her pericardium (the sack around her heart) to build a septum in her
heart and construct a mitral and tricuspid valve. He removed her PA band. In six hours, our daughter had a whole heart. She came through her second heart surgery and
had pink little lips for the first time in her life. Ellie didn’t end up needing a transplant, but
congenital heart defects are never gone.
They can be repaired, but her heart will never be like mine. There is always a chance that she will need
additional surgeries in the future – always a chance that a transplant will
again be on the table. While we don’t
have to think about a transplant today, so many of the other families we met in
the hospital are looking at that option.
So many of them have been told by multiple hospitals across the country
that their child was not eligible for the transplant list because of their
disability. If we have to face this
again down the road, I’m counting on you to make sure that her disability will
not stand in the way of her getting the treatment she deserves.
Ellie just celebrated her third birthday. She is in preschool and loves to dance. She’s been in fashion shows and on
billboards. She knows over 120 words in
sign language and is learning more and more verbal words every day. Her brothers adore her and we cannot imagine
our lives without the joy she brings to our days.
I’m asking you to make sure that other families have this
same opportunity. We all deserve the
watch our children grow up. We all
deserve the right to equal medical care and opportunities for all
treatments. Denying a transplant to
someone because their life is deemed less valuable is absolutely unacceptable.
As Courtney reminded you, six states (Pennsylvania, Oregon,
Maryland, California, New Jersey, and Massachusetts) have unanimously passed
similar bipartisan legislation to prevent organ transplant waitlist
discrimination. Two more (Kansas and Delaware) currently have bills working their
way through state legislatures. Let Ohio
be next.
Adults and children with disabilities in need of an organ
transplant should be afforded greater legal protection. Their lives are
inherently worth saving. Thank you for your support of H.B. 332.
Warm Regards,
Jackie Ward
Miami Valley Down Syndrome Association
Community Engagement Coordinator
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