Two toddlers with sickle cell disease are staying healthy, thanks to strong bond between mom and care team
For some superheroes, invisibility is a superpower. But for Lorin, a “superwoman” single mom of three, one of her powers is making an often “invisible” disease visible.
“You have to fight for what’s best for your kids because most people don’t understand, especially because my kids have a condition they can’t see,” she said. “They just see me wiping off the swings at the playground and think I’m some hyperactive new mom.”
Lorin has two children, Nairobi and Obe, with sickle cell disease. Sickle cell disease causes red blood cells to become hard, sticky, and C-shaped, instead of round. This makes it difficult for red blood cells to move freely throughout the body.
“The sickle-shaped cells clump together and block the flow of blood, so it can’t get to the tissues and organs and deliver oxygen,” said Kirsten Mouradian, FNP-C, a pediatric nurse practitioner who cares for Nairobi and Obe. “Pain is so subjective; people say things like ‘Oh, you should toughen up,’ but when you understand that the pain is because tissues can’t get oxygen, it’s not about getting tough, it’s about trying to restore blood flow and oxygen to the tissues.”
As an advocate for her kids and everyone living with sickle cell disease, Lorin is helping shine a light on this condition while also juggling the demands of caring for her children.
Lorin has a wealth of knowledge about sickle cell disease, starting from when she was a child, because her dad has the condition.
“I think I’m a different mom because I’ve seen what sickle cell is like from my grandma’s perspective, my dad’s perspective, and how it affects the children of people who have it,” she said.
When she was pregnant with her first child, Marley, now 10, Lorin found out she had the sickle cell trait; even though she didn’t have sickle cell disease herself, she could pass it on to her children if their father also had the trait.
Years later, Lorin was pregnant with her second child, Nairobi, when she found out that Nairobi’s father also had a family history of sickle cell disease.
“That’s when it got scary,” Lorin said. “I burst into tears, because I knew what life with sickle cell disease is like, seeing my dad go through it.”
Lorin had amniocentesis to confirm that Nairobi had sickle cell disease. She was nervous but said that the first few months of Nairobi’s life were relatively healthy.
“I still had no idea what it was going to look like; it seemed like she was going to be fine,” Lorin said. “But then she started to get really sick out of nowhere. She would get a cold and then develop a fever. When kids with sickle cell have a fever, they automatically go to the hospital. There was this influx of doctors’ appointments and this heightened sense of worry and pressure.”
People with sickle cell disease have a weaker immune system because the sickle-shaped cells damage their spleen, so bacteria and viruses send their body into overdrive. Fever can also cause intense pain for people with sickle cell disease.
“These kids get sick in the way that every kid gets sick, but for kids with sickle cell, who don’t have a working spleen, a fever becomes a medical emergency,” Mouradian said.
It was during one of these early fever scares that Nairobi started receiving care at Stanford Medicine Children’s Health. Lorin had just moved to the Bay Area, far from her family and support systems on the East Coast.
“Lorin is so incredibly resilient—it takes a lot of courage to make a fresh start somewhere far from your support system, apply for jobs, and take care of three kids,” said Anju Goyal, MD, a pediatric hematologist who cares for Nairobi and Obe. “Lorin is truly a superwoman.”
Lorin said it took some time to establish trust with Nairobi’s doctors and nurses, but then they became part of the same team.
“There was a collaborative approach—they listened to me and made me part of my kids’ care,” she said. “That’s one of my biggest tips to parents facing this situation: Pick doctors that help you feel supported and are honest with you.”
Obe was born 10 months after Nairobi.
“There was a lot of turmoil in choosing whether to go through with the pregnancy,” Lorin said. “A lot of really hard questions came up. But I felt like I could give my kid a fighting chance if they had the right doctor.”
Since she had just moved to the area, Lorin was living in an Airbnb, and later a shelter, which made it hard to keep her kids from getting sick and landing back in the hospital. And caring for kids with such intense medical needs made it difficult for Lorin to work outside the home.
“The kids were admitted quite frequently—one would get sick and have a high fever, which can potentially cause a pain crisis, so they have to receive antibiotics right away,” said Caitlin Smith, RN, a nurse coordinator who frequently cares for Nairobi and Obe. “And then it’s inevitable that the other kid gets sick. It’s such a hard thing caring for two children with special medical needs at the same time.”
Lorin and social worker Valeria Ndunga worked together to help Lorin find more stable housing, and the kids’ health improved. Ndunga also connected Lorin with Cayenne Wellness Center, a nonprofit that provided help with transportation to appointments and babysitting. Over time, Ndunga and Lorin developed a deeper bond.
“We’re like a big family,” Ndunga said. “I just like to check in with Lorin when she comes in so she knows there’s always someone who has her back, who will listen to her. She’s such a strong advocate—she will advocate all the way to the end of the earth. She does not give up.”
When they turned 6 months old, Nairobi and Obe started taking a medication called hydroxyurea, which helps increase a protective type of hemoglobin called hemoglobin F.
“We call it F for fantastic,” said Mouradian. “Babies naturally have high levels of hemoglobin F until they turn 6 months old, and they don’t have any sickle cell symptoms during that time. After that, when fetal hemoglobin levels start to go down, they start to have symptoms. Hydroxyurea helps the body continue to make hemoglobin F so they can have the same protection that they had in the first six months of life for the rest of their life.”
Medications like hydroxyurea and changes to the family’s living situation have helped keep the kids healthier.
“In the first year of Nairobi’s life, she was unfortunately admitted to the hospital so frequently that our whole inpatient hematology team knew her,” said Dr. Goyal. “Now, she hasn’t been admitted since December; she made it through the rest of respiratory virus season without any complications. Obe has also had far fewer admissions than his sister.”
Along the way, the bond between Lorin, her children, and their care team strengthened.
“We all call them ‘the babies,’” Smith said. “When they come in, we all want to hold them. They’re such loving, sweet, happy kids.”
Nairobi, now 3 years old, is best described as a “little firecracker” by her mom. Despite everything she’s been through, she is so full of energy and light. Already, she loves reading and is very curious about how the world works. Lorin thinks she’ll be a scientist someday. Obe, who’s 2, has a gentler spirit and loves music.
“They light up our clinic whenever they come in,” Dr. Goyal said. “They love each other deeply despite all they’ve been through, and they want things to be better for everyone who has to be in the hospital. We all feel so protective of them.”
Nairobi will have her spleen removed this summer, which should give her more energy and reduce her pain crises.
“The spleen is meant to filter and clean the blood, but in patients with sickle cell disease, it can become enlarged and act like a sponge, trapping red blood cells and platelets so they can’t carry oxygen around the body,” Dr. Goyal said.
When they’re older, Nairobi and Obe may undergo a stem cell transplant or gene therapy to cure their sickle cell disease. For now, they are hoping to remain healthy enough to start preschool and follow in the footsteps of their older sister, a strong student who loves school.
“An environment like preschool can be hard for kids like Nairobi and Obe,” Smith said. “The teachers have to think about things that don’t matter as much for other kids. For example, cold weather can bring on pain crises, so Lorin does a great job of keeping the kids bundled up outside. It’s one of those invisible illnesses where you can’t tell by looking at someone. A jacket doesn’t seem that important, but for them it is.”
Lorin is happy with her decision to make the Bay Area her new home.
“There are so many wonderful hospitals from coast to coast, leading many people to question why I chose the pressure of moving across the country to start a new life,” Lorin said. “But caregiver burnout is real. I didn’t just need a medical team I could count on—I needed an environment that facilitated peace. I recharge and feel happiest next to the water, and I thrive on sunshine during tough days. Here, I am surrounded by nature and by people who make appreciating it a way of life. I love the progressive approach to medicine that Stanford practices and the willingness to pursue new methods.”
Her care team is happy that she decided to stay in the Bay Area too.
“I feel really honored that Lorin trusted us to take care of the whole family,” Dr. Goyal said. “People with sickle cell disease need to feel seen and heard, and it’s not always easy finding specialists who can care for them, because they’re such a vulnerable population and they’re facing the ongoing impacts of systemic racism. We need to do our part to advocate and protect them and make this a welcoming place.”
Learn more about sickle cell disease.
