Michigan parents battling to save baby without working immune system

Ordinary germs could threaten Samantha Heady's life

DEARBORN HEIGHTS, Mich. - New parents Jenna and Brenden Heady love to show off their beautiful baby girl, but they're forced to do it behind the safety of their front door.

Baby Samantha can't leave their Dearborn Heights home.

"The doctor told me, 'Did you ever see the movie "The Boy In The Bubble?" I said, 'Yeah.' He said, 'That's what we're talking about. She doesn't have a proper, functioning immune system.'"

Samantha Grace was born in May -- 9 weeks premature -- weighing just 3 pounds, 8 ounces. Her newborn screening test revealed that she has a rare disorder called severe combined immunodeficiency, known as SCID.

Samantha's immune system doesn't work properly, meaning even a simple cold could threaten her life. Just 40 to 100 babies with SCID are born in the U.S. each year.

"We didn't know what it was then," said Brenden. "Essentially, I thought they just gave my baby a death sentence."

SCID was the disease featured in the John Travolta movie "The Boy In The Plastic Bubble." The film was inspired by the life of David Vetter, a Texas boy with SCID who lived his entire 12 years in a sterile bubble.

Samantha is not in an actual bubble, but she is being protected.

"We take germaphobe to a new level," said Brenden.

So they won't have to wear masks when they're with Samantha, Brenden and Jenna wear masks whenever they leave the house, including for our interview on their front porch. They also shower multiple times a day, and any clothes worn outside of the house are immediately changed and then washed.Samantha's grandmothers are the only ones allowed to visit, and they must wear freshly washed clothes and masks when they do.

"Somebody drops off groceries to us or if I go to the grocery store, we go to the back door, we bring the groceries in, we put them away with Lysol wipes, we Lysol the floor where we set them," said Jenna. "Our goal is to be as clean as possible, all the time. Everything is a process right now."

Samantha's health is not the only challenge they're facing. Brenden was laid off from his job soon after Samantha was born. Jenna is a nurse, but is taking leave to reduce the risk of bringing home an illness to Samantha.

"I work in a hospital. I was absolutely paranoid. One of the other nurses would wash my clothes for me, so I didn't have to bring them home," said Jenna.

Family and friends have come to visit through the front door and started a website to help the family stay afloat financially until they can return to work.

"If we didn't have our friends and family, I don't know what we'd do, just the spiritual and moral support" said Brenden.

Then, there's the kindness of strangers.

"Complete strangers. I can't believe how people reach out to help us in a time like this," said Jenna. "Just shows you how beautiful people can be."

The plan is for Samantha to undergo a bone marrow transplant in September, in hopes of giving her the immune system she lacks.

"We have to do everything we can for our daughter, and they have had great success with it," said Brenden.

In spite of everything, Jenna and Brenden consider themselves lucky. According to the SCID Angels For Life Foundation, only 23 states in the U.S. currently test for SCID as part of newborn screenings.

"I am forever thankful that somebody advocated to put this on our state's newborn screen because this can be fatal if it's not caught before it's too late," said Jenna. "We're blessed that she gets a chance, she's going to get a chance to get this treatment."

Jenna and Brenden want to see every state test for SCID at birth. Studies find bone marrow transplants are most successful in children with SCID if they're performed in the first months of life. They also encourage everyone to join the bone marrow registry. They don't know who Samantha's donor is, but they're very grateful someone out there is a match for her.

"It's amazing," said Jenna. "As soon as we found out about it, one of the first things we did is we went and signed up at BeTheMatch.org and put ourselves on the registry."

The couple has also found a silver lining in their forced isolation.

"Most people go their entire lifetime with their kid and never have this kind of time with her," said Brenden.

"She has no idea what's going on, which is nice," said Jenna. "She just thinks, 'Gee, my mom and dad stay here all the time!'"

Still, they dream about a different life for Samantha.

"I just want her to get through this and have a happy healthy childhood and adulthood," said Jenna.

"Eventually I know she will have to leave the house," said Brenden. "Ironic, considering we can't, but I want to get to that point with my daughter. I want her to have a future."