Wednesday, February 18, 2009

Justice for Jack....His parents need your support!

What would you do if your child died and you found out later that it might have been preventable? What would you do if you later learned secrets that were being kept from you by the hospital and its staff that could have made a difference between the life and death of your child? How do you explain to your child's brother that his twin won't be coming home to celebrate their 4th birthday together? How do you rise above it and find a way to wake up each and every morning to face another day without your child?

While the above questions have been posed as hypothetical, the sad reality is that my friends, Robin and Todd Corbo, are having to figure out the answers to those questions while learning first-hand what they will have to do to find justice for their son, Jack.


Jack Corbo, was born a twin and contracted a virus in the hospital as a baby; the virus severely damaged his heart. This led to a heart transplant at the University of Minnesota, Children's Hospital - Fairview when he was four months old, but the Corbo’s later discovered questionable social history about Jack’s donor heart. The heart never worked right from day one. As if that wasn't disturbing enough, the Corbo's later learned that four other hospitals had turned down the donor baby's heart, due to the questionable social history of the heart, before it was accepted by the U of M for Jack! None of this information was disclosed to the Corbo's at the time of the transplant....how does that qualify as "informed consent"?!

Within time, the donor heart began to fail and it was obvious that Jack would need another heart transplant. The staff at the hospital claimed he could only be classified 1A (top of the list) if he were in the hospital (he had been managing ok in his wait at home, able to have some quality of life and be with his twin brother). While Jack was in the hospital waiting, the program downgraded his status several times and didn’t tell his parents; once so the surgeon could go on Spring break. There were several "questionable circumstances" as to why Jack’s status seemed to yo-yo between the lower status and the much-needed upgrading; it was even reported once "they forgot."

It's important to note here that when the surgeon determined that Jack would need to be re-transplanted, she suddenly starting blaming him and saying he might not deserve another heart. Her direct quote to Robin Corbo was "I'm not sure he should get another heart. I think he might have done something to that heart." She claimed that he could have some congenital myopathy that would just attack a new heart, when in reality, she was just creating a smoke screen and trying to blame the patient instead of the fact that she had accepted a bad donor heart. She knew the history of the donor heart, yet never disclosed any of it to the Corbo's, and obviously she wasn't about to disclose it when she determined Jack would need another heart. Furthermore, to cover herself, this surgeon delayed listing Jack last summer until THREE neurologists cleared him saying he did not have any congenital issues. Precious time that was wasted to cover her own mistake.

As Jack and his parents waited for a new heart for five months at the hospital, he contracted influenza B and a PICC line infection that was transferred from the feces of another patient, one of the most commonly-reported problems plaguing hospitals. He died shortly before his 4th birthday.

The Corbo’s discovered through an investigation following Jack’s death that he was not required to live in the hospital to be eligible for 1A classification. By avoiding the stay in the hospital, he would not have contracted influenza B and the PICC line infection, which compromised his immune system even more than it already was. Sadly, the most horrifying information they learned was that Jack missed out on TWO heart offers that came at the time he was downgraded in the hospital to a 1B. The Corbo’s were unaware. It was at this time they discovered the background on the first heart the hospital gave Jack.

Upon learning all this disturbing information after Jack's death, the Corbo's decided to take matters into their own hands. To think this could possibly happen to another innocent child, they knew they had to do something to change the system that had failed their son. When the Minneapolis NBC affiliate learned of Jack's story, they conducted a three-part investigative series (“Finding a heart the hard way”) which originally aired on Nov 11-13, 2008 and chronicles the death of Jack Corbo and what happened to him as he waited for a second heart at the U of M. The series was later posted on You-Tube (link to follow).

http://www.youtube.com/watch?v=8R8fi-XSrj8

How can anyone read Jack's story and/or watch the You-Tube video and not feel compelled to join the Corbo's in their plight to find Justice for Jack? When watching Robin Corbo on the NBC interview describe her last few moments with her precious son, it just breaks your heart and makes you want to take action to prevent another parent from ever having to hear their child's last words be "All done, Mama, all done" because he is tired of fighting so hard to survive.

The University of Minnesota and UNOS (United Network for Organs Sharing)need to be held accountable and investigated. The U of M is an institution that receives both state and federal taxpayer dollars and UNOS is a federal contractor. Americans need to hold our sub-standard healthcare system accountable. We all deserve better.

This compelling story needs to be told to illustrate what is happening in our hospitals today. If everyone reading this post could take just a few minutes out of their busy schedule to click the link below ("e-mail letter in support of media coverage") and send it to the following media contacts, it would be greatly appreciated. The more letters that get sent, the better the chances are that the Justice for Jack story will be told through the most influential media sources, ultimately influencing the changes that need to happen. Even if you are only able to send one or two e-mails, you'll have helped spread the word. If you happen to know contacts or have sources within the media that you feel would be helpful, please contact them as well.

E-mail letter in support of media coverage

The Oprah Show:
Jack Mori, producer (e-mail links will be highlighted when you click on them)
jmori@harpo.com

If you'd prefer to write your own words, you can go directly to Oprah's site by clicking this link Contact Oprah and sending her a letter, requesting that she look into the "Jack of Hearts" story and the Justice for Jack campaign.

Dateline NBC:
Marianne Haggerty, coordinating producer
marianne.haggerty@nbc.com

People Magazine:
Elizabeth McNeil
liz_mcneil@peoplemag.com

CBS EARLY SHOW:
Betsy Alexander, Senior Producer
alexanderb@cbsnews.com

GOOD MORNING AMERICA:
Patty Neger, Senior Producer
Patty.neger@abc.com

TODAY SHOW:
Marc Victor, Senior Producer for the 9-10 am hour
Marc.victor@nbcuni.com

If you'd like to contact the Corbo's directly, please visit their website at Caring Bridge - http://www.caringbridge.org/mn/corboboys/index.htm

As the Corbo's story has gotten more press, attention and support by the public, the U of M has changed its policy and is allowing patients waiting for a transplant to wait at home and still be listed as a 1A, if they are able. While this is definitely a triumph to be celebrated, it is extremely disturbing and unfortunate that this change in policy was made too late to make a difference for Jack. The U of M Children's Hospital has also had a steep decline in admissions to its children's floors. Due to the negative publicity the hospital has received since this story has come to light, it is believed that other pediatric doctors are not referring patients to the hospital because of what happened to Jack.

Thank you for taking the time to read this and supporting the Justice for Jack campaign. If there is any consolation to be found by the Corbo's, it's that in the short time Jack was here on earth, he touched so many lives.

12 comments:

twinmama said...

This is a horrific worst nightmare come true. I am so incredibly sorry for your friends and will pray for their healing and their efforts to help other families. (I also will commit to sending out emails.)

It breaks my heart to think that hospitals and doctors would not only make mistakes, but not own up to them to save the life of a precious child. I think there are good doctors out there who do good work, but our healthcare system has gotten messy and this tragedy is a lesson that we as parents must always question those who are looking over the health of our children. Even when those doctors roll their eyes when we ask questions or bring up something that we have learned. Hopefully this will scare doctors and it should. Parents have a right to know every detail of their child's medical care and why they are receiving it. Mom and Dad are in charge, not the doctors. Period.

God love little Jack.

Yaya said...

This is so sad.

mrsbear said...

How awful, Helene. It makes me so sad for their family and his poor twin. I'm so sorry. Thank you for passing it along.

Tracy said...

I am indignant. Horrible. Just horrible. And needless.

Done, as requested.

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Morgan said...

That is so so sad. I can't imagine the pain that family must be feeling right now- all the "what if"s that must be running through their heads. I hope they are able to find some peace amongst all the pain.

Lisa said...

I'm so sorry for their loss. I sent the letters as requested, but wish I could do more for them.

Lana said...

Wow. I'll pray the family can find some peace in this horrible, horrible situation. I hope the doctors/hospital get investigated and that this does not just get "swept under the rug". R.I.P. little Jack.

Doré said...

This is so heartbreaking. I just emailed all the contacts you listed.

I so hope that little Jack gets the justice he so rightly deserves. It is devastating that he had to die a senseless death. He sounds like an amazing little boy!

My prayers are with the family.

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I figure that if the children are alive when my husband gets home at the end of the day, I've done my job.

----Roseanne Barr



 
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