Local woman with Down syndrome to receive liver transplant

Their late biological daughter led Jeff and Mollie Smale to one of their adopted daughters.

Hannah Smale died at the age of 4. She was born with Down syndrome and heart issues, which are common for people with Down.

Hannah, the couple's firstborn child, endured four open-heart surgeries and died in 1991 before she could get a transplant.

Alana Smale is likely to fare much better.

Alana, 25, is scheduled to receive a liver transplant on Monday at Cleveland Clinic. Like Hannah, she has Down syndrome. Alana also suffers from primary sclerosing cholangitis.

PSC is a chronic liver disease in which the bile ducts inside and outside the liver become inflamed and scarred, and eventually narrowed or blocked. When this happens, bile builds up in the liver and causes further damage.

The Smales are speaking out about their daughter's transplant to draw attention to the issue of people with Down syndrome and other disabilities not being prioritized for transplants and possibly being turned away because of their conditions.

"Many people with Down syndrome in society aren't considered to be candidates for an organ transplant, and that begs the question, 'Whose lives are valuable?''' Charlotte Woodward told Forbes magazine for a story in January 2021.

A House bill introduced last year prohibits health care providers and other entities involved in matching donated organs with recipients from denying or restricting an individual's access to organ transplants solely on the basis of the individual's disability, except in limited circumstances.

It is named after Woodward, who has Down syndrome but received a heart transplant.

Alana has been awaiting transplant for four years

Alana had been on a transplant list for four years. When her family changed hospitals to Cleveland Clinic, she had to wait only four or five more months. Cleveland Clinic also works with live donors, which the family's previous hospital did not.

Alana really didn't show any symptoms until her 21st birthday, when she turned yellow and had to be transported by medical helicopter to a hospital.

Jeff and Mollie found out about the dire situation from their babysitter. They were in California, getting one of their daughters settled in at college some 3,000 miles away.

Since then, the Smales have been attuned to Alana's condition, which worsened in January. They took their daughter back to Cleveland Clinic.

"In February, she was near death," Mollie said. "We thought this was it. They were going to do this (transplant) or reject her."

Alana has since recovered, which is why surgeons wanted to schedule the transplant.

"She's at a very good time right now," Jeff said.

The family met with the surgeon on Tuesday, which helped ease Mollie's worried mind.

She had flashed back to Hannah's fourth open-heart surgery, from which she never recovered. Doctors had given the 4-year-old an 85% chance of survival.

"I know it's different because this is a highly successful surgery," Mollie said.

Alana has a living donor

She also noted the "angel donor." Alana will receive part of that person's liver. Surgeons will attach part of her small intestine to the liver, which will regenerate in six months.

The surgery takes 10 hours. Alana will spend at least two weeks in the hospital and will need four to six weeks for a full recovery.

"There's some stuff she'll have to do the rest of her life," Jeff said.

Primary sclerosing cholangitis returns in 30% of the people who receive a liver transplant.

Alana does not communicate well, so she's not fully aware of what's to come. Her mother said Alana knows she will be "sick" for some time.

Born in Seattle, Alana is half Alaskan Indian. The Smales adopted her when she was only 10 days old.

The Down Syndrome Association of Greater Cincinnati reached out to them about Alana because of their previous experience with Hannah.

Even though she is 25, Alana could pass for 15. Wearing a jean jacket, she sat next to her mother for an interview.

Alana was ready for the interview to be over so that she could go to one of her favorite places, the library. She reads on a first-grade level.

"She loves artwork, and she loves to draw these characters," Mollie said.

Her favorites are the Teenage Mutant Ninja turtles and Scooby-Doo.

"She's very loving and very friendly and very easy to get along with," her father said.

PSC has taken a toll on Alana.

"When she's really sick, she can't get out of bed," Mollie said. "This disease has slowed her down."

When the family lived in Elyria and Alana felt better, she volunteered with the local food bank and belonged to the Girl Scouts.

Family has relied on faith

Jeff served as a pastor for 30 years, including 24 in Elyria. The family's faith has carried them.

"It's everything," Jeff said. "It gives us hope that there's answers. It helps us to go day-to-day to trust in the Lord."

Now retired as a pastor, Jeff runs an online Bible college. Mollie works part-time at Richland Newhope as an independent provider.

They have had four children of their own and adopted eight more, including four daughters with Down syndrome.

It all goes back to Hannah, who was born in 1987. Mollie was so moved by her firstborn that she wrote a book called "For This Child I Prayed."

"Hannah opened our eyes to the world of people with special needs," Mollie said.

Jeff added, "They always love unconditionally. They don't look at color or race or money."

Most recently, the couple adopted two daughters from Ukraine just before Russia invaded.

Since Hannah, though, their hearts have been with those with Down syndrome.

They feared Alana might be passed over for a liver transplant because of her poor communication skills.

Surveys show discrimination in transplants

According to the Developmental Disabilities Coalition and reported by Forbes, a 2008 survey of 88 transplant centers found that 85% of pediatric transplant centers consider intellectual or developmental disability as a factor in their transplant eligibility determinants.

Further, the study found that 71% of heart programs surveyed always or usually considered intellectual/developmental disabilities when deciding transplant eligibility.

The primary forms of disability discrimination are the refusal to evaluate a person with a disability for a transplant and the refusal to place a person with a disability on the national organ transplant waiting list, according to a National Council on Disability study in 2019.

"They (people with Down) have a purpose," Mollie said. "They can do so much."

The Smales are coming full circle with Alana. She will get the chance for a transplant that Hannah never received.

"She (Hannah) came for a purpose," Mollie said. "We wanted her legacy to carry on."

mcaudill@gannett.com

419-521-7219

Twitter: @MNJCaudill

This article originally appeared on Mansfield News Journal: Mansfield woman with Down syndrome to receive liver transplant