Staten Island baby, 3 months, awaits liver transplant: ‘She’s a kind soul but she’s in so much pain’

STATEN ISLAND, NY – Little Aleia Widlund of Rosebank has undergone more medical treatment than most adults. She is three months old.

Second daughter of Patrick and Tara Widlund, Aleia suffers from biliary atresia, a rare liver disease that requires a liver transplant. Tara, a surgical technician, and Patrick, an electrician from Local 3, are also the parents of 18-month-old Freya.

Biliary atresia is a blockage in the tubes (ducts) that carry bile from the liver to the gallbladder. This congenital condition occurs when the bile ducts inside or outside the liver do not develop normally. It is not known why the biliary system does not develop normally.

“Aleia has already given us more happiness and joy than we could ever imagine,” Tara said in an interview with Advance/SILive.com. “As a child, she is a kind soul but she is in so much pain. She is also so strong and a fighter. I know she will make it. She still giggles and tries to play when she’s not in pain. She is a beautiful angel child.

Prior to the transplant, Aleia underwent an emergency procedure at Weill Cornell Hospital on October 10 to remove blockage or bile that was unable to pass internally due to the effects of biliary atresia. After a three-week stay, she was transferred to the New York-Presbyterian Columbia Center for Liver Disease and Transplantation. Now, the wait for the transplant is open.

The transplant involves an intense initial recovery and overall should last from one to two months.

“The hardest part of Aleia’s journey to recovery is watching this little angel go through pain, not grow up like a normal baby, and watching her on a feeding tube that isn’t helping,” Tara said. “We will have to try the next step. Our entire lives changed overnight. Our plans and goals have been altered by this horrific misfortune that has been forced upon us all.

“Fear of the unknown is very difficult. We are trying to trust God and the doctors that my daughter will be fine. There is also the financial fear of not being able to go back to work.”

Aleia’s liver procedures require full-time home care for her recovery and maintenance through extended medication and follow-up care. However, to successfully administer the daily medications, the couple both took indefinite time off from their respective jobs.

“Our family went from two incomes to none because no one else could give our daughter medication daily,” Tara said. “Also, our insurance should only cover certain parts of the procedures and medications. We used to take her to Columbia once a week but then she stopped gaining weight so now we take her twice a week so the doctors can check on her. We speak to his nurses daily.”

Because Aleia is a newborn, she has complications and risks with a major organ transplant that would not be present if she received the transplant at an older age. “Our little Aelia is three months old and she only weighs nine pounds,” Tara said. “Ideally, to greatly increase the success of her transplant, she should weigh at least 20 pounds.”

Aleia is fed via nasogastric (NG) tubes in hopes of gaining weight as soon as possible. It’s also on a plethora of medications and vitamins that would be considered almost too much for any adult. He suffers from pain and motion sickness from the medications.

Aleia will soon need to be hospitalized for a PICC line (a type of long catheter that is inserted through a peripheral vein, often in the arm, into a larger vein in the body, used when intravenous treatment is needed for a long time).

“Unfortunately, we’re not eligible for any home care and disability doesn’t cover biliary atresia until you have the transplant,” Tara said. “We are both out of work. Aleia is on seven medications and we are taking care of her. But right now we have no income.

“Aleia’s body can’t hold anything down due to liver failure, but in order to have a more successful liver transplant, the doctors want her to weigh 20 pounds. But my baby has big problems. He’s only nine pounds and continues to lose weight.

A Go Fund Me page was created to help with the Widland family’s hospital costs, including costs for emergency room visits, ward transfers, surgeries, and expensive medications.

Courtesy of Tara Widland

Little Aleia Widlund is fed through a nasogastric tube. (Courtesy of Tara Widlund)

Courtesy of Tara Widland

Little Aleia Widlund, two months old, with her parents, Tara and Patrick Widlund, and sister Freya, 18 months. (Courtesy of Tara Widlund)

Courtesy of Tara Widland

Little Aleia Widlund is trying to gain weight in anticipation of a liver transplant. (Courtesy of Tara Widlund)

Courtesy of Tara Widland

Baby Aleia Widlund, two months old, with her parents, Tara and Patrick Widlund, and family members. (Courtesy of Tara Widlund)

Staten Island baby, 3 months, awaits liver transplant: ‘She’s a kind soul but she’s in so much pain’

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