When Lisa Newtop got pregnant, some of her friends pulled away from her. Their parents thought that she might be a bad influence.
She was 30 at the time, with a stable job and long-term boyfriend.
But she has Down syndrome — and that was enough to make some people oppose the idea of her becoming a mother.
With the support of her own mother, Patti, Lisa had her baby, who also was born with Down syndrome, 27 years ago. In many ways they charted a new path: For decades in the United States, people with Down syndrome were often forcibly sterilized, and even now it's rare for people with Down syndrome to start their own families.
It hasn't always been easy, Patti and Lisa say, but it's been worth it.
“I am proud of my son,” Lisa tells TODAY.com.
Empty nest surprise
In 1995, Patti White and her new husband, Norm, were settling into their life as empty nesters.
“We were gonna travel, we had all these plans,” Patti, now 75, tells TODAY.com.
Then Lisa, Patti’s 30-year-old daughter from a previous relationship, dropped a bombshell.
“I was checking my messages at work, and there was this message from Lisa saying, ‘Hi, mom. I just wanted to call to let you know that you’re going to be the grandmother,’” Patti recalls.
Patti listened to Lisa's message three times. A call to Lisa’s social worker confirmed the news.
People, even close friends, said, "You shouldn’t take this on, you can do an open adoption."
Patti White
Patti and Norm drove from Sacramento, California, to Napa, where Lisa was receiving supportive living services and working 32 hours a week.
“I couldn’t imagine placing the baby for adoption, and the whole way there, I was thinking, ‘Norm is going to leave me.’ We had only been married a few years at that point," Patti says. “This was way more than he had bargained for.”
Norm wasn’t going anywhere.
“Four days later, he looked at me and he said, ‘No matter what you decide to do, I’m going to be there for you,’” Patti says.
Not everyone handled the news like Norm did. Patti remembers that many of Lisa's friends pulled away.
"Their families deserted us," she says. "They were afraid that Lisa would influence their daughters. And that was very lonely for her."
Patti was 48 when Lisa gave birth.
“A lot of people, even close friends, said, ‘Patti, you shouldn’t take this on, you can do an open adoption and remain in the baby’s life,” Patti says. “People definitely expressed concern.”
Patti and Norm created a support plan, which included hiring a doula to help Lisa understand pregnancy and childbirth.
Motherhood and Down syndrome
On Feb. 10, 1996, Lisa and her boyfriend, Tim, welcomed a son named Nic. Like his parents, Nic also has Down syndrome. According to the Centers for Disease Control, each year about 6,000 babies are born with Down syndrome in the U.S., making it the most common chromosomal disorder.
Few people with Down syndrome become parents. In the first half of the 20th century, forced sterilization was the law of the land in 33 states for people with Down syndrome and similar conditions. While those laws have changed, sometimes as late as the 1980s, there's still a stigma around people with Down syndrome having children.
Many aspects of motherhood came naturally to Lisa. But not all.
“The hardest thing for Lisa, is that she’s very sensitive, and when Nic would cry, she assumed he was in pain, and she felt responsible,” Patti says. "She couldn't grasp that babies just cry, often for no reason at all."
After Nic was born, Lisa and Tim moved to Sacramento to be closer to Patti and Norm.
“We knew they would need a lot of support and services,” Patti explains. She notes that they didn't have much of a roadmap. It was 1995 and there was no Google.
"I did some research, but there really weren't many cases like Lisa's, and that was pretty scary," Patti says.
Patti says one of the best things they did was finding experts to help.
For instance, Lisa wanted to play with her son, but she didn’t know how to choose an appropriate toy, so the Whites found a specialist to come to the house and demonstrate what to do.
Lisa was responsible for Nic’s diaper bag, and Patti would tape a note to the bag listing the items that needed to be packed. Patti says Lisa is a very "strong reader." Lisa did bath time — always supervised — and changed Nic’s diapers. She breastfed Nic for two weeks, and then after switching to formula, Lisa prepared his bottles.
Of course, there were challenges.
“When he was little and did something that annoyed her, she thought he was doing it on purpose and she'd get upset," Patti says. "Stuff like that was difficult."
'I'm lucky'
Nic is now 27, and loves to talk about his two moms: Lisa and Patti. He grew up with Patti and still lives with her in Stockton, California, while Lisa has an apartment nearby. Nic was 5 when his father Tim passed away from a heart condition. Norm, who Nic called Dad, died in 2021.
When asked about Lisa, Nic describes her as “loving and caring.”
“We play games and go for walks,” Nic tells TODAY.com.
Nic says Patti is a “great cook.” Patti says she's grateful that Nic is around to help her reach things and open jars now that Norm is gone.
“I’m lucky because I have two moms,” Nic says.
Nic hopes to become a bus boy, a rapper, a DJ and a director. Nic is an actor and has appeared in movies and television shows.
Like every mom, Lisa loves to brag about her son.
“He’s the first thing she tells people about,” Patti adds.
Lisa sometimes struggles with her child growing up and asserting his independence, her mom says.
“Lisa has trouble letting him make his own decisions. She wants to assist him and he doesn’t need any assistance,” Patti explains. "She treats him younger than he is."
"No, I don't," Lisa interjects.
Looking to the future
Patti says that Lisa was recently diagnosed with dementia. Alzheimer's disease affects roughly 30% of people with Down syndrome in their 50s, according to the National Down Syndrome Society (NDSS). By their 60s, the number comes closer to 50%.
"Nic is constantly writing scripts. I keep telling him he needs to write a script about him and his mom," Patti says. "I don't think he fully understands what's happening to her, but he has asked me a few times, 'Why doesn't Lisa remember?'"
With Norm gone, Patti has been leaning on her friends at the Global Down Syndrome Foundation.
"We can't say enough good things," she gushes.
Patti, who is 75, thinks a lot about what will happen to Lisa and Nic when she's gone. She's still trying to figure out a plan.
“That is the billion dollar question for any person who has a disabled offspring, and I’m not satisfied with my answer at this moment,” Patti says. “I am still exploring and trying to create and discover the right situation.”
Nic graduated from the Wayfinders Program at California State University, Fresno in 2020. Wayfinders is a 2-year non-degree independent living certificate program for young adults with intellectual and/or developmental disablities. He hopes to move out of Patti's house into his own digs in the coming months.
"I'm ready!" he says.
Charlotte Woodward is another college graduate with Down syndrome, and she now works as an education program associate with the National Down Syndrome Society. Woodward stresses that all people have reproductive rights.
“Like everyone else, people with Down syndrome have hopes, dreams, and desires. These hopes, dreams, and desires can include finding a partner who loves them, marrying and having thoughts about becoming a parent,” Woodward tells TODAY.com. “Bodily autonomy and the right to make decisions about our lives is extremely important. Too often this has not been the case, and others — such as parents, doctors, and the government — have made decisions for people with disabilities without their input.”
Michelle Sie Whitten, president and CEO of the Global Down Syndrome Foundation, has a 19-year-old daughter named Sophia who has Down syndrome. Sophia wants children one day, and Whitten fully supports that.
"(Sophia) would be a fabulous mother — it just might look different,” Whitten tells TODAY.com “A lot of people with Down syndrome need support to live independently. So if you need support to live independently, what would that look like as a parent? There are different challenges.”
Whitten is a friend of the Whites and says she has been personally inspired by their story.
“When you see Nic, and you meet Nic, you see how he’s filled Lisa’s life and all of their lives. Life would not be the same without Nic. Life is great because of Nic,” Whitten says.