BOSTON — Shannon and Mike Miceli of East Freetown have lived every parent’s worst nightmare.
On September 15, 2017, at just two years old, their son Chase died as he was waiting for a heart transplant.
“It’s hard to get past that. It’s hard to go to sleep at night thinking that he could have… it could have been so different,” Shannon Miceli said. “I strongly believe in my heart that had he been given the chance to receive a heart transplant, he would be here today. He’d probably grow up to accomplish something huge, he was just an amazing little kid.”
According to the U.S. Department of Health and Human Services (HHS), 130,000 Americans were on organ donation wait lists as of July 2019. Thousands of those people live in Massachusetts. HHS also reports 20 people die each day waiting for a transplant.
Chase was born with hypoplastic left heart syndrome -- a rare congenital heart defect in which the left side of the heart is severely underdeveloped. Chase was essentially born with half a heart.
Throughout his short life, he spent more time at Boston Children’s Hospital than he did at home. His name was on a waitlist for a heart transplant, but an organ didn’t come in time.
“It was the last thing that I ever thought would happen to us, and it did,” Mike Miceli said. “Now we see a system that is a flawed system, and a system that’s really not working to its full potential.”
According to HHS, 95% of adults in America support organ donation but only 58% are signed up as donors.
The Micelis are now pushing for new legislation in Chase’s honor to increase the number of registered organ donors.
“What we would like to do is at birth everyone is automatically an organ donor, unless they choose to opt out,” Shannon Miceli said.
This type of opt-out (or presumed-consent) policy means everyone is automatically an organ donor by default unless they actively choose to opt out. Once a person dies, however, their family would likely get the final say in whether organs would be donated.
Under current policy, family cannot override a person’s decision to donate if they are 18 years or older and registered prior to their death. If they did not register, family members can choose whether to have their loved one’s organs donated, should that be an option.
Nearly two dozen countries have already adopted types of opt-out policies, including Austria, Belgium, Chile, Italy, Poland, Portugal, Spain, and Sweden.
Many of those countries saw a five to 25% jump in organ donations, but not everyone is convinced the U.S. would see similar results.
“There’s more we need to do,” New England Donor Services CEO Alexandra Glazier said. “But what we don’t want to do is disrupt a system that’s actually working well for the U.S.”
Glazier believes switching to an opt-out system may have the opposite effect in the U.S.
“Could the rate actually drop? The idea that the government would say that we’re going to be recovering your organs for transplant without asking is really inconsistent with the way we make decisions here as a culture,” Glazier said.
Glazier said a person is far more likely to receive an organ donation than to be an organ donor.
“It’s only about 2% of hospital deaths that have any clinical opportunity for donation,” Glazier said. “Only a very small number of deaths are clinically eligible for organ donation. An individual has to die in a hospital, on a ventilator, and without certain diseases that would be a rule-out for organ donation, like cancer, for example.”
While increasing the number of registered organ donors is important, Glazier said it’s equally necessary to find ways to make more organs eligible for transplant.
“There are types of medical innovation on the way… devices that are going to help us take organs that are currently not transplantable and repair them to the point that they are transplantable,” said Glazier.
The Micelis recognize that changing a decades-old law will be no easy feat. Ultimately, they hope their efforts and sharing their story will inspire people to support organ donation.
“The system in place failed us,” Shannon Miceli said. “It doesn’t fail everybody, but we’d like to increase the odds of more people having success stories.”
So why don’t more people register? Common misconceptions about organ donation
Boston 25 wanted to know why so many people choose not to be organ donors.
“Generally, people are concerned that if they register as a donor, maybe somehow that would impact or interfere with their life being saved if they were in an emergency circumstance,” Glazier said. “That is absolutely not the case.”
Glazier said donor registration is not checked by the hospital, emergency room staff, ambulance staff, or EMTs.
“It’s something that is only done once everything has been done to save that individual’s life,” Glazier said. “Then organizations like mine [New England Donor Services] are called because there’s a potential for organ donation. It’s only at that moment that the registry is checked. That’s really an important thing for people to understand.”
Glazier said some people are also confused about the logistics of organ donation.
“There are some who are concerned about the details,” Glazier said. “Of course you can have an open casket. It should not impact your funeral arrangements.”
She also confirmed organ donation comes at no expense to the donating party.
“The costs of organ donation are not born by the organ donor’s family,” Glazier said. “The vast majority of the public is really supportive of organ donation, so we want to move people from the general feeling of support to action: Register as a donor, tell your family this is what you want, and then also to support those decisions with other innovations and structures within the medical system so that we can really maximize the opportunities that we do have.”
For more on some of the common misconceptions surrounding organ donation, watch this interview:
For more information on the Federal Government’s plan it increase the availability of donor organs.
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