Parents of baby who died waiting for a liver searching for answers with donor system
MILWAUKEE (CBS 58) -- The story of baby Marcus Albers captivated the state, but the 4-month-old in need of a liver died after they couldn't find a match in time.
CBS 58's Lindsey Branwall sat down with his parents in their first interview since losing their son.
The Albers family is finding their new normal. Three-year-old Dominic is getting used to a life where he now only knows his little brother Marcus through photographs.
In March, baby Marcus was admitted to Children's Hospital in need of a liver transplant from a living donor because of a rare genetic disorder.
"He captivated everybody, he was a cute little baby," says Marcus' dad, Tony Albers.
When the message went out on social media, so many people called the transplant center that Marcus' parents, Tony and Whitney, created an overflow email where more than 20,000 people said they wanted to donate.
"We're so grateful we had the opportunity to have these people available for the transplant," Tony said. "On the flip side, you have that many people coming to you and then they couldn't do anything because of the bottleneck effect, that was hard."
A potential donor fell through and the Albers were told the screening process had to start over. In the days that followed, Marcus became too sick to accept a new liver and time ran out.
"There's got to be a faster way of doing it," Tony Albers said.
It's left the family with a lot of questions.
"I don't know if it's not enough logistics, not enough beds, however that works," said Albers.
We asked the Transplant Center about their process.
They said in part, dozens "immediately" mobilized resources this is one of the "most complicated medical procedures" and a rigorous process that takes time that unfortunately, many individuals in need of a transplant don't have."
Joel Newman from United Network for Organ Sharing (UNOS) says hospitals look at a number of factors.
"This will not just be the transplant recipient. The living donor is also a patient and they want to make sure that's a very good match. They want to make sure that potential living donor is as healthy as possibly can be and can participate in their own care knowing that there are some risk," Newman said.
The Transplant Center says they follow the protocols established by the National Transplant governing bodies and that it is common practice for medical staff to review all cases regardless of outcome.
But Marcus' parents say they don't want any other family to go through this.
"I don't know what the laws are. I would say a third-party website, where people can apply, criteria would be posted and then maybe have, a third party screener," Tony Albers said.
The Albers hope the memories of Marcus will inspire change.
"This kid has done more in his life in his four or five months of living than I have done in 36 years and it's just the impact he had to everybody," Marcus' mother, Whitney said. "It just galvanized everybody. That's what I'll remember most.
CBS 58 did reach out to several lawmakers asking about any laws or changes that could be made to the system and we will continue to follow up.
Tony and Whitney say this experience has left them focused on getting their 3-year-old a new liver before it's too late.
Marcus' older brother has the same disorder and will need a whole liver transplant from a deceased donor.
You can see the hospital's full statement below:
“We are grateful for how our community joined us in such a remarkable way to support the Albers family.
Every time a patient is in need of a transplant, we immediately mobilize our resources. Identifying and transplanting a living donor organ is among the most complicated medical procedures. Our transplant team spent countless hours following the process used by programs across the country to identify potential donors.
Screening potential live liver donors is a rigorous process that takes time that unfortunately many individuals in need of a transplant don’t have. Currently, there is no national database for living liver donors.
The Albers family continues to be in our thoughts and has our deepest sympathy. Nobody should have to endure the loss of a child.”
- The Transplant Center, a joint program of Froedtert & the Medical College of Wisconsin and Children’s Hospital of Wisconsin
“Transplant families generally have 1-2 primary contacts that are helping coordinate their child’s care. Dozens of people support that work, which includes screening potential donors.
Because there is no national registry for live liver donations, individual hospitals must collect, process and identify potential donors.
We follow the protocols established by the national transplant governing bodies.
The screening process at a local level for live liver donation is rigorous. A potential donor must first have accurate information about the potential benefits and risks associated with donation. The process starts by completing an anonymous online evaluation form. At the very minimum, a person must:
Be willing to donate without any pressure from a family member, friend or someone he/she knows.
Be healthy and free from any major physical or mental illness.
Be between the ages of 18 and 55, and if a woman, not be pregnant.
Be willing to donate without being compensated in any way for the donation.
Additional considerations after meeting the basic requirements include an initial screening to see if a person is compatible with the intended transplant recipient and a psychosocial and medical evaluation. Along with understanding the recovery process from surgery, potential donors are also advised to ensure that financial and insurance factors have been considered.
The Transplant Center provides detailed information for anyone interested that can be found at https://www.froedtert.com/transplant/liver-transplant/live-donor
It is common practice for medical staff to review all cases regardless of outcome.”