Ellie is a sassy, spunky, and very smart soon-to-be 3-year-old who loves preschool. Looking at this thriving preschooler you may be shocked to know that just months ago she and her family were fighting for her life.
“Ellie was a hot mess even before she arrived. At 20-months pregnant we were told she would have a severe heart defect, and would likely need a heart transplant,” explains Ellie’s mom, Jackie. She went into heart failure at 15 days old, which escalated the need.
A day after Thanksgiving, at 2 1/2 months old, the Ohio doctors said it was worse than they first thought. Ellie would need three open-heart surgeries. They planned a heart cath to get a better idea of her current state. The doctors explained that her risk factors for surgery had increased, but they gave Ellie a trach and g-tube and planned for a surgery that would stop the pulmonary hyper tension.
Doctors told Ellie’s mom, Jackie, that this surgery had to be wildly successful or Ellie wouldn’t be eligible for other surgical interventions and would be left with the very broken heart she was born with. She’d have to live out what little was left of her life from there.
When her mom asked, “What about a heart transplant?” With the knowledge that it was likely the only other option that would let Ellie survive, the doctor replied “Nope, not for her.”
“Even if she qualified for the organ transplant waitlist, which she wouldn’t because she has Down syndrome, now she has other high risk factors that prohibits eligibility,” the doctor told Ellie’s mom. Jackie couldn’t believe it! What does Down syndrome have to do with a life-saving organ transplant?
Ellie’s family isn’t alone. A 2008 survey of organ transplant centers found that 85% consider neurodevelopmental status as a factor in determining eligibility.
The Americans with Disability Act protects against health care discrimination for individuals with disabilities, but enforcement is weak. That’s why I advocated for a state bill to address organ transplant waitlist discrimination in Ohio. My Ohio Representative, Niraj Antani, introduced the bill in August and Jackie Ward and I will be presenting proponent testimony in the Health Committee on Wednesday.
“The possibility of a bill like this makes me tear up,” says Ellie’s mom, Jackie. “I was shocked that our doctor presented Down syndrome as a barrier for organ transplants. There are too many barriers for our kids already. We can handle difficulties in public and on the playground, but for a medical world that deems her life less valuable to save, that is unacceptable.”
Six states (Pennsylvania, Oregon, Maryland, California, New Jersey, and Massachusetts) have passed similar bipartisan legislation to prevent organ transplant waitlist discrimination. Two more (Kansas and Delaware) currently have bills working their way through state legislatures.
In most states, there are no checks and balances on the decisions transplant centers make.
Without regulations, personal bias and preconceptions can play a role in life-or-death decisions. Often doctors cite two reasons for discrimination based solely on disability:
- Some doctors may refuse an organ transplant for individuals with disabilities that need help to follow post-transplant treatment plans (even if they have already secured post-op support).
- Some doctors may believe that individuals without a disability should have higher priority to organ transplant wait lists.
Jackie realizes her daughter had other risk factors that may play a role in eligibility, but Down syndrome shouldn’t be one. “We were devastated! We just couldn’t imagine going home and watching our Ellie die,” Jackie explains.
The family didn’t give up without a fight.
“We looked to the top cardio-thoracic surgeons in the United States to find a doctor that thought she was savable,” Jackie describes. They ended up at Boston Children’s Hospital. “They said they don’t see any reason why they couldn’t do a regular repair, and give her the new heart she deserved.”
After six hours in the operating room, Ellie’s mom Jackie says her 9-month-old baby came out looking pink for the first time in her entire life. “She recovered beautifully! For the first time in 9 months we could take a breath and see past today. She had a real future,” Jackie exclaims.
Next week is Ellie’s third birthday, and every year since her heart surgeries the family sends her medical team an update. Jackie wants them to know “Ellie loves openly and brings joy to each and every day.”
Message me if you want help advocating for similar legislation in your state.
I had no idea Down Syndrome was still a mitigating factor, thank you for sharing this to enlighten us!
Technically ADA protects against this type of discrimination, but enforcement is non-existent and discrimination is hard for parents to prove. A state law like this one would give parents the power to advocate for their child when they need it most!
TCH has transplanted trisomy 21. So thankful Ellie has avoided transplant. May she have many more years with her heart and if she needs one I pray we are able to grow our own by then!