Powell family advocates for more testing in newborn screenings after daughter's death
Mabry Kate died from a rare neurological condition called Krabbe disease at 10 months old. Her brother Owen was also diagnosed with the condition.
Webb Family
Nine years ago, the Webb family received a devastating and deadly diagnosis for their infant daughter.
Soon after her death, they learned they were pregnant with another child who also had the genetic disease. Doctors came up with a plan to save his life.
Now, thanks to embryo adoption they were able to expand their family.
The Webb Family "As a parent, being told there's nothing you can do—you just feel completely helpless and out of control."
Owen Webb is 9 years old and taking on a new role as big brother to his baby sister, Sonnie.
His mother, Christin, doesn't take one second for granted, even the tedious chores of motherhood. "Seeing her with him has been just indescribable," she said.
Christin's home is filled with joy after years of grief and uncertainty.
In 2015, she and her husband, Kyle, lost their first child, Mabry Kate, to a severe genetic neurological disorder called Krabbe disease. The condition affects fewer than 5,000 people in the U.S.
"As a parent, being told there's nothing you can do—you just feel completely helpless and out of control," Christin said.
Krabbe patients require a stem cell transplant soon after birth to increase their chances of survival. But for Mabry Kate, the diagnosis came too late. She passed away at 10 months old.
At the time, Krabbe disease was not included in newborn screenings in Tennessee.
"It was just a whirlwind because we came straight from burying our daughter to trying to save [Owen's] life and not knowing what the outcome would be," Christin said.
A team of doctors came up with a treatment plan for Owen, also diagnosed with Krabbe disease, while the Webbs and other families lobbied lawmakers and medical experts for more testing.
In 2015, the Mabry Kate Act was passed in Tennessee to include the condition in newborn screenings. Just this year a United States panel voted to recommend adding Krabbe to newborn screenings nationwide.
"It's what I think any parent would do in our situation," Webb said. "Just giving parents the option to choose treatment for their child and know what's available to them was important to us."
Owen recently celebrated his "re-birthday"—the day he got his stem cell transplant. "Receiving those donor stem cells was the day that, like, everything changed and his life began," Christin said.
Now, he's thriving and finding his independence along the way.
It's a testament to his big sister, Mabry Kate, and how her story gave him a chance at his own. "We credit her with saving Owen's life, because, had we not been informed about the disease through her life, his life would have looked like hers," Christin said.
The Gibson Family "We never dreamed we would get this, and this is more than we could have asked for."
Owen's new baby sister, Sonnie Mayes, is named after Mabry Kate.
Sonnie was born through embryo adoption with the help of the National Embryo Donation Center based in Knoxville.
NEDC, the largest program of its kind in the country, serves nearly 150 embryo adoption patients each year. Donated embryos are stored in liquid nitrogen.
Couples who want to adopt must go through a home study. Embryo transfers can happen in as little as six months once the couples are approved.
Since 2003, NEDC has received and cared for more than 2,500 sets of frozen embryos resulting in more live births than anywhere in the world.
"Our oldest twins were cryopreserved a little more than 30 years before they were born," NEDC Director Dr. Jeffrey Kennan said.
Keenan says embryo adoption offers an alternative to couples hoping for a family. "Maybe they've tried everything else and nothing has worked, and embryo adoption can still give them an excellent option for getting pregnant," he said.
Clinton couple Tina and Ben Gibson struggled for years with infertility before discovering NEDC and embryo adoption.
"We already knew that we were going to deal with infertility, that it's going to be hard, but like, you can't be prepared for that until you get to the point where you really want a kid," Tina Gibson said.
After going through the embryo adoption process at NEDC, Tina gave birth to a daughter in 2017.
Emma Wren spent 24 years as a frozen embryo, setting a new world record at the time for the longest-frozen embryo to come to birth. Then in 2020, Tina gave birth to another daughter named Molly.
Molly and Emma are genetic siblings. Both were stored as frozen embryos in 1992.
"They think they're a frozen Oreo," Tina joked. "Yeah, that's what Emma said."
Their births got a flood of international media attention from magazine articles to television news coverage. "We don't we didn't think it was gonna go that big," Ben Gibson said.
The Gibsons are enjoying life as a family of four and encouraging other families to consider embryo adoption.
"It was just so neat to see, when we chose embryo adoption, how everything worked out so beautifully," Tina Gibson said. "We never dreamed we would get this, and this is more than we could have asked for."
More than 1.5 million human embryos are currently being stored in the U.S. Click here to learn more about the National Embryo Donation Center and embryo adoption.