Four-month old baby with Down syndrome dies after multiple hospitals denied a heart transplant

[Michie]

Baby Zion Sarmiento was born with complete atrioventricular canal defect, and died 13 weeks later when hospitals said operating on his condition would be a 'waste of a heart.'


(Live Action) – Zion Sarmiento, born with Down syndrome, has died at less than four months old after multiple hospitals refused him a heart transplant.

On June 15, 2021, Zion was born to Josh and Bobbi Sarmiento. In addition to having Down syndrome, Zion was born with a complete atrioventricular canal defect (CVAC), or a large hole in the center of his heart. For children with Down syndrome, CVAC is not unusual, and with open-heart surgery, is often able to be repaired.

The goal for Zion was, at first, to get him to four months old so he could be as strong and healthy as possible for the surgery. After spending 40 days in the NICU, he was allowed to go home before beginning to see his cardiologist. They decided to perform his surgery at three months old, on September 20.

Unfortunately, the surgery did not go as planned. Zion went into cardiac arrest, and was placed on life support. His surgical team continued trying to help, with five more surgeries performed in just 12 days. They determined that Zion’s best hope would be a heart transplant, and his family began contacting numerous transplant centers to get it arranged.

Yet they were turned down by every single one, and Zion died on October 8, 2021.

According to the family’s official Facebook page, every single hospital they contacted turned them away; reportedly, they were told it would be a “waste of a heart.”

Continued below.
Four-month old baby with Down syndrome dies after multiple hospitals denied a heart transplant - LifeSite

 

[dogs4thewin]

They have to make choices based on how likely he is to survive after the transplant and what kind of life he would be likely to lead after it ( quality wise) as well as how well his parents would be able and willing to care for his special needs and follow strict doctor's orders as a result of the transplant. If it is determined that someone else would be more likely to benefit from the transplant in terms of surviving and following those rules then that is who the heart goes to not just someone who would die without it because most of the time people who need a transplant will end up dying at some point if they do not get it.

 

[Michie]

The National Down Syndrome Society (NDSS) has released a statement about Zion’s death, urging for legislation to be passed preventing this kind of discrimination from happening again.

“We are deeply saddened to learn of the passing of Zion Sarmiento, an infant with Down syndrome who was denied the heart transplant he needed to survive,” the NDSS wrote on Facebook. Our team has been in touch with Zion’s family in Florida, and we are working closely with them and others to advance policy and practices that ensure people with Down syndrome have equal access to life-saving organ transplants. Stories like Zion’s are why NDSS advocates for state-level legislation and why we have championed the Charlotte Woodward Organ Transplant Discrimination Prevention Act (H.R. 1235) in Washington, D.C.”


They further directed followers to contact Congress to push for action on a ban on transplant discrimination, as well as to join the Zion’s ARMY Facebook page.

Sadly, Zion is far from the first child with Down syndrome to pass away after being denied a transplant. Though people often believe this kind of medical discrimination is illegal due to the Americans with Disabilities Act, that is a false assumption.

Currently, there is no federal law preventing this kind of deadly discrimination from taking place. A 2008 study from the Autism Self-Advocacy Network found that 85% of pediatric transplant centers take neurodevelopmental status into consideration when approving or denying transplants.

A 2016 letter sent to the U.S. Department of Health and Human Services’ Office for Civil Rights pointed out that many transplant centers are still refusing organ transplants to people with disabilities. It also included a statement from Dr. Arthur Caplan, director of medical ethics for New York University’s Langone Medical Center, which said, “If the potential recipient is severely intellectually impaired… I do not think it makes sense to consider that child for a transplant.”

Only a handful of states have passed bills banning this discrimination. A bipartisan bill is being considered, but it’s moving too slowly to save people like Zion, whose death could possibly have been prevented.

 

[dogs4thewin]

The National Down Syndrome Society (NDSS) has released a statement about Zion’s death, urging for legislation to be passed preventing this kind of discrimination from happening again.

“We are deeply saddened to learn of the passing of Zion Sarmiento, an infant with Down syndrome who was denied the heart transplant he needed to survive,” the NDSS wrote on Facebook. Our team has been in touch with Zion’s family in Florida, and we are working closely with them and others to advance policy and practices that ensure people with Down syndrome have equal access to life-saving organ transplants. Stories like Zion’s are why NDSS advocates for state-level legislation and why we have championed the Charlotte Woodward Organ Transplant Discrimination Prevention Act (H.R. 1235) in Washington, D.C.”


They further directed followers to contact Congress to push for action on a ban on transplant discrimination, as well as to join the Zion’s ARMY Facebook page.

Sadly, Zion is far from the first child with Down syndrome to pass away after being denied a transplant. Though people often believe this kind of medical discrimination is illegal due to the Americans with Disabilities Act, that is a false assumption.

Currently, there is no federal law preventing this kind of deadly discrimination from taking place. A 2008 study from the Autism Self-Advocacy Network found that 85% of pediatric transplant centers take neurodevelopmental status into consideration when approving or denying transplants.

A 2016 letter sent to the U.S. Department of Health and Human Services’ Office for Civil Rights pointed out that many transplant centers are still refusing organ transplants to people with disabilities. It also included a statement from Dr. Arthur Caplan, director of medical ethics for New York University’s Langone Medical Center, which said, “If the potential recipient is severely intellectually impaired… I do not think it makes sense to consider that child for a transplant.”

Only a handful of states have passed bills banning this discrimination. A bipartisan bill is being considered, but it’s moving too slowly to save people like Zion, whose death could possibly have been prevented.

If the baby was denied a transplant because it was felt that another child would live longer and have a higher quality of life if given the heart then there is nothing wrong with what the hospitals did.

 

[Michie]

0000

If the baby was denied a transplant because it was felt that another child would live longer and have a higher quality of life if given the heart then there is nothing wrong with what the hospitals did.

Not according to disability groups. It’s a pattern obviously.

 

[dogs4thewin]

Not according to disability groups. It’s a pattern obviously.

As someone with a disability myself I disagree.

 

[Michie]

As someone with a disability myself I disagree.

Well that’s your prerogative. As Catholics, we are called to defend the least among us. Disability groups obviously see a problem as well.

 

[dogs4thewin]

Well that’s your prerogative. As Catholics. We are called to defend the least among us.

Here's the deal when there is a limited supply of something (in this case hearts but it could be any organ or really anything for that matter decisions must be made about who would be most likely to BENEFIT from having those resources spent on them. If it is felt that a particular person is unlikely to have a positive outcome from having that resource spent on him or her then he or she will not get it. For example, in this case suppose there was another child that was not disabled that could also benefit from the heart and if he or she got the heart that baby or child would have the chance to live a full life ( pretty close to the average time people are expected to live and then you have this child who if he gets the heart is given say 30 years to live. Well, if there is one heart and given those odds then the non-disabled child should get the heart.

 

[Michie]

Here's the deal when there is a limited supply of something (in this case hearts but it could be any organ or really anything for that matter decisions must be made about who would be most likely to BENEFIT from having those resources spent on them. If it is felt that a particular person is unlikely to have a positive outcome from having that resource spent on him or her then he or she will not get it. For example, in this case suppose there was another child that was not disabled that could also benefit from the heart and if he or she got the heart that baby or child would have the chance to live a full life ( pretty close to the average time people are expected to live and then you have this child who if he gets the heart is given say 30 years to live. Well, if there is one heart and given those odds then the non-disabled child should get the heart.

I’m siding with the op. I have no idea why you feel the need to debate this here. Obviously they gave the family false hope only to find he was turned down everywhere.

 

[dogs4thewin]

I’m siding with the op. I have no idea why you feel the need to debate this here.

Honest question why did you make the post if that was not your intent?

 

[Michie]

Honest question why did you make the post if that was not your intent?

Did you notice the contact info? Why not post it?? Why does it bother you so?

 

[dogs4thewin]

Did you notice the contact info? Why not post it?? Why does it bother you so?

It does not in fact it seems to bother you that this was the decision made. I get confused I thought this forum was mostly debate

 

[Michie]

It does not in fact it seems to bother you that this was the decision made. I get confused I thought this forum was mostly debate

OBOB? No not really. I mean Catholics can debate here but that’s about it. And yes it does bother me this decision was made. They were instructed to give him time to gain strength and they could go for the transplant only to be turned down everywhere they sought it.

 

[dogs4thewin]

OBOB? No not really. I mean Catholics can debate here but that’s about it. And yes it does bother me this decision was made. They were instructed to give him time to gain strength and they could go for the transplant only to be turned down everywhere they sought it.

OH see nor am I Catholic never set foot in a Catholic church in all my 30 years.

 

[Michie]

OH see nor am I Catholic never set foot in a Catholic church in all my 30 years.

You can’t see each forum you are in?

 

[dogs4thewin]

You can’t see each forum you are in?

so wait this is just for catholics?

 

[Michie]

so wait this is just for catholics?

Anybody can post in here for fellowship, questions, friendly commentary but yeah, this is the Catholic forum. The SOP for the forum should help clear it up for you. Every faith forum has their own SOP.

 

[OldWiseGuy]

It would be useful to know how many suitable hearts were available at the time of this event, how many babies were on the list for heart transplants, and what their prognosis was.