Mindi and Mark Piasecki relax with their daughter, Tess, who recently received a thymus transplant that strengthened her immune system.(Photo: Photo courtesy Mindi Piasecki)
When Neenah residents Mark and Mindi Piasecki met their adopted daughter Tess as an infant last year, they were told she might not survive a year due to an immune deficiency. Now they are preparing to celebrate her first birthday with a purple butterfly cake Aug. 5.
The Post-Crescent featured the Piasecki family in January, when the family was hoping a thymus transplant would boost Tess’ immune system. Since then, Tess had a successful thymus transplant at Duke University Hospital in North Carolina and is waiting near there in isolation with Mindi for permission to enter the outside world and head back home to Neenah.
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As Mindi spoke on the phone from the condo in North Carolina where she and Tess have been sequestered for months, the baby babbled incessantly in the background.
“Do you hear that?” Mindi laughed. “She’s a little talkative. She has made so much progress. The doctors said she may not live out a year. They were wrong. She’s doing tremendously.”
A successful transplant
Although Tess’ transplant May 22 was fairly routine, the road to get there was anything but routine. It was the result of an anomalous collision of three families.
When Teresa Katherine Piasecki, who the Piaseckis call Tess, was born Aug. 5 in Texas, she lacked an immune system and was extremely susceptible to disease. Her birth family knew she would need extensive medical attention and they couldn’t afford to have one of them living in North Carolina near Duke, according to Mindi. Tess also required isolation to protect her from disease, which would be nearly impossible with her two birth siblings around.
Meanwhile, the Piaseckis had been trying to start a family for years. They had suffered three miscarriages and five failed attempts at adopting foster children.
The Piaseckis connected with Tess’ birth family through Special Angels Adoption, which helps families adopt babies with special needs. The Piaseckis were overjoyed to find Tess, but it would take the generosity of another family to give Tess her best chance at life.
At Duke University Hospital on May 6, two days before Tess’ adoption was made official, Dr. Louise Markert made one of the best calls the Piaseckis have received. The family of a child having heart surgery was willing to donate a chunk of thymus tissue, which had to be removed to give doctors access to the child’s heart.
“I called them and said, ‘You need to start driving as soon as you can,’” Markert said.
This tissue was placed in a sterile cup, sliced up and filed in a lab while doctors ran tests to make sure it was healthy. Then they waited for Tess.
Tess’ adoption was finalized May 8 and the Piaseckis set out the same day to North Carolina, still unable to believe their fortune in finally adopting a daughter.
“When my husband and I were heading to court, we both were thinking that something was going to go wrong,” Mindi said. “We had no faith it would happen, and we still wake up thinking, is this real? She is everything.”
When the thymus tissue was inserted in Tess’ thigh May 22, she joined a group of about 70 people who have had a thymus transplant at Duke, the only hospital in the country that does the procedure. About 70 percent of these patients have survived, with the oldest one now 21 and healthy, Markert said.
A normal future
Although it will take several months to see how well the thymus does in Tess’ body, Markert said she is hopeful about Tess’ future since she made it into and out of the procedure without catching an infection.
“The proof will be in the pudding and we don’t quite have the pudding yet,” Markert said. “The good thing is she is so healthy — just happy and fat.”
Markert attributes Tess’ good health in large part to her parents’ vigilance in protecting her from infections. Without a functioning immune system, Tess has been mostly stuck inside her Neenah home and North Carolina condo. If they have to take Tess out, the Piaseckis wrap her stroller in plastic.
“The parents are a real inspiration,” Markert said. “A lot of people want to adopt normal children. To adopt someone who doesn’t have an immune system is really remarkable. It just shows how much goodness can be in someone’s heart and how much love they can have for others. It’s an inspiration to all of us to try and help others, the least among us.”
Although Mindi said she’s going “a little stir-crazy” in North Carolina, she is looking forward to bringing Tess home to Neenah and doing things for the first time when she recovers.
Having spent the first year of her life living in isolation and only seeing most of the outside world through the film of plastic over her stroller, Tess has a lot of surprises in store.
“I can’t wait to see her meet another child,” Mindi said. “She’s never met another child.”
Although Tess’ immune system will not be strong enough for daycare, Mindi said she expects Tess will eventually be able to attend elementary school.
Tess may even have the chance to have a sibling. Mindi said she and Mark had an updated home-study done and are looking into adopting again through Special Angels Adoption.
As they celebrate Tess’ first birthday, the Piaseckis are already dreaming about the next one.
“We’re hoping to have a big old outside party next year for her birthday when she can be around all those people,” Mindi said.
—Rory Linnane: 920-993-7184 or rlinnane@gannett.com; on Twitter @RoryLinnane
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