The family of a Wisconsin baby, Marcus Albers, announced that the boy passed away after he was awaiting a liver transplant at the Children’s Hospital in Milwaukee, according to reports.
The 5-month-old, they said, “passed away peacefully in our arms, with his caring doctors, loving nurses and amazing staff by his side,” according to Fox6.
Earlier this month, parents Whitney and Tony Albers said the boy had a few weeks to live without a liver donor, the report said. He suffered from a rare genetic disorder, Immunodeficiency 47.
This infant was only given a couple weeks to live if he doesn't get a liver transplant. They're looking for a living…
Illustrating how rare the condition is, according to WSAZ, there are only 12 known cases of people with Immunodeficiency 47.
In a lengthy statement, his family said they were thankful for “the thousands of people who graciously volunteered to be a living donor for baby Marcus.”
“We want to especially thank the individual(s) that were screened and selected for transplant, but ultimately did not qualify. There was no disappointment from us. The donor’s health was just as important as Marcus’,” they added.
The parents then criticized the donor process.
"Thank you to the thousands of people who graciously volunteered to be a living donor for baby Marcus."
“However, our disappointment does lie with the living donor screening process,” the parents continued, adding that there needs to be a “better system in place to handle the large volume of selfless people attempting to call and be screened.”
“This would have made it more likely that Marcus would have matched with multiple qualified living donors. Due to the limitations of this screening process, Marcus became too ill for surgery while waiting for matches,” they said.
Marcus, they said, “passed away peacefully in our arms with his caring doctors, loving nurses, and amazing staff by his side.”
In a prior update on GoFundMe, his parents said on GoFundMe that Marcus “was diagnosed with liver disease after birth and is currently in the ICU awaiting a liver transplant.”
Five-month-old Marcus Albers is one of 12 people in the world suffering from Immunodeficiency 47.
The family added: “Our son would have been so proud at the overwhelming attention given to children waiting for organs. Unfortunately, his organs were not healthy enough to donate,” according to the Journal-Sentinel, which also reported that their son became too ill for surgery.
The Froedtert & the Medical College of Wisconsin and Children’s Hospital of Wisconsin also released a statement on the boy’s passing.
“Our care teams are grieving with the Albers. Their family is in our thoughts and have our deepest sympathy. Nobody should have to endure the loss of a child. We are grateful for how our community stepped forward in such a remarkable way to support the Albers family,” the hospital said, reported WPTV.
The statement continued: “Thousands of individuals signed up to be evaluated as potential donors. Currently, there is no national database for living liver donors. Our transplant team spent countless hours following a rigorous process used by programs across the country to identify potential donors. As of January 2019, there are more than 113,000 candidates for transplant on the U.S. national waiting list. To add your name to the deceased donor registry list, please click here.”
He died peacefully in his parents' arms with doctors, nurses and staff by his side.
A cursory search of Immunodeficiency 47 turns up only a few results.
But according to a 2006 report (pdf) from the American College of Chest Physicians, “A 47-year-old man employed as a sound technician presented to our clinic with 3-month history of chronic cough and shortness of breath.”
“His symptoms included marked worsening dyspnea initially with activity but later with only minimal exertion. He had also noticed worsening cough, orthopnea, and ankle swelling. Based on his history of congestive heart failure, he was treated with diuretics with only mild improvements in symptoms. At presentation, dyspnea would develop with approximately 100 yards of walking.”