Six adopted kids, all with special needs, add up to one remarkable family
The Moore family of Concord, California, has set a record for having the most kids from one family receiving care at Stanford Medicine Children’s Health. We couldn’t think of a nicer family to reach this milestone.
Most parents think having one or two kids is challenging enough. Imagine having six, all with special needs. It takes a couple with literal superpowers to pull it off, and that’s Jacqui and Rodney Moore. Her organizational skills are off the charts. His commitment is beyond imaginable. And their compassion, love, and faith bring it all together.
How they did a 180 on their priorities and went from a jet-setting, high-powered business couple—Jacqui as a vice president in banking and Rodney in upper management at top-10 companies—with no children to adopting six orphans from China is a fascinating story.
There’s Elyse, age 19; Jadyn, age 18; Jessica, age 14; Ellis, age 14; Jensinne, age 12; and Eliana, age 10.
It all started at Stanford Medicine Children’s Health, with Jadyn.
Taking the leap with Jadyn
“We began talking about all the orphans in the world, and through a colleague we became connected to Jadyn,” says Rodney.
Jadyn had her leg amputated at age 1 by a visiting Stanford Medicine Children’s Health doctor at her orphanage in Beijing, China. The couple took on the role of advocate for Jadyn, helping her get a prosthetic leg. It took about a year, and the result was a poorly constructed metal prosthetic that was connected by women’s hose. It was clunky, and it buckled under her as she was learning to walk. Her plight tugged at the couple’s heartstrings.
“After so much advocacy, it seemed like we were basically her parents. So we stepped out in faith and we adopted her,” says Jacqui.
The couple’s friends were shocked. They couldn’t believe the two—who always said they never wanted kids—would adopt in their early 40s and interrupt their demanding careers and world travels. It seemed out of character, but it was the best move the couple has ever made.
Next up, giving voice to Elyse
From Jadyn, it snowballed. An orphanage in China reached out to the couple about a second little girl, named Elyse, who had lupus and recurrent respiratory papillomatosis (RRP)—a rare, chronic disease without a cure. RRP creates hundreds of small growths in the airways that can make it difficult or impossible to breathe. She had a tracheotomy—a surgical opening in her neck with a breathing tube in her trachea (windpipe)—to allow her to stay alive.
“They told us one of the only places in the world that treats RRP was Stanford Children’s Health. So we thought, instead of just hosting Elyse while she gets care, why don’t we adopt her?” Rodney says.
“The alternative was too awful for us to imagine. Hosting Elsye for six months then sending her back to the orphanage was unthinkable,” Jacqui adds.
The two learned how to manage Elyse’s tracheotomy, which helped her breathe around the growths. Doctors told the couple that Elyse’s RRP was one of the worst cases they had ever seen. Due to the relapsing and returning nature of the disease, she underwent several operations Alan Cheng, MD, FACS (her otolaryngologist or ear, nose and throat doctor) and the pediatric otolaryngology team before her RRP abated and her tracheotomy was removed. Thankfully, she hasn’t needed a tracheotomy to breathe very often since then.
Elyse has seen both recurrence and remission of her RRP over the years, and she has received regular care at our Aerodigestive and Airway Reconstruction Center, one of the busiest pediatric airway centers in the United States. The care team has performed several procedures for her, both to remove papillomas—to keep them from spreading throughout her airway and into her lungs—and to treat scarring on her larynx (voice box) to help her maintain her voice.
“We want to make sure we keep the disease at bay, but we also want to make sure we protect her vocal cords and airway. Because Elyse is now 19, and she has a job and goes to school, it’s important to her to have a strong voice,” says Douglas Sidell, MD, FACS, her otolaryngologist (ear, nose, and throat doctor). “That’s why we see her regularly in our Voice and Swallow Program. In this multidisciplinary center, we can evaluate the dynamic function of her larynx in the clinic, perform implant injections in the operating room to improve her voice, and provide regular speech-language therapy with our voice therapists.”
To treat Elyse and other children with RRP, the pediatric airway team uses pulsed dye and blue lasers to shrink the blood vessels that feed the papillomas and injects medications to keep the growths from returning. Stanford Medicine Children’s Health is one of a few nationally leading hospitals that are conducting research on a new IV medication that’s been shown to dramatically reduce papillomas in the airway.
“For Elyse, we do all of this with caution, particularly considering her lupus. We work closely with Imelda Balboni, MD, PhD, and her team in rheumatology, who ensure just the right balance of immunosuppression,” Dr. Sidell adds. “We keep in close communication with the family, and if problems arise, we are right there.”
Adding in sweet Jessica
After adopting the two toddlers, Jacqui gave up her job and started volunteering full-time as an advocate for children in Chinese orphanages. That was where she met a little girl named Jessica. The orphanage nannies called her “the last one” because she was the last one to get fed, the last one to get dressed, and the last one to get washed. This happened because Jessica is deaf and they couldn’t easily communicate with her.
“I told Jacqui that I was sure she would get adopted because she was so sweet, but she told me it was Usher syndrome, which meant she would also go blind. And on top of that, she had leukemia. So we decided we had to adopt her,” Rodney says.
Usher syndrome is a rare genetic disease that causes both hearing loss and vision loss. Blindness didn’t set in right away with Jessica, but it is progressing, so she is currently receiving care at the Byers Eye Institute at Stanford Health Care from Loh-Shan Bryan Leung, MD. Luckily, Jessica has a special type of leukemia that is basically asymptomatic—meaning she doesn’t live with any of the symptoms of leukemia.
A new home and new ears for Jensinne
In her work, Jacqui met Jensinne, who desperately needed loving care. Not only did the Moore family give Jensinne a home; they gave her back her spirit. Because of her energetic personality, she wasn’t treated well at her orphanage.
“When we met Jensinne, she was afraid of everybody, but she has completely changed. If you come to our home, she’s the one who will open the door and greet you,” Rodney says.
Jensinne was born without ears and with severe hearing loss due to a condition called bilateral microtia, where her ears didn’t develop in the womb.
“I adore the Moore family. They are on top of all the complex issues for all of their complex kids, and they are such unwavering advocates for Jensinne,” says otolaryngologist Mai Thy Truong, MD.
Jensinne recently turned 12, and her birthday wish was to get ears. The Microtia & Ear Canal Atresia clinic at Stanford Children’s is internationally recognized for their innovative treatments and research. The multidisciplinary care team repairs microtia with rib cartilage graft reconstruction.
“It’s not very common for a children’s hospital to have a dedicated microtia clinic that cares for children’s reconstruction and hearing needs holistically in one, coordinated fashion,” Dr. Truong says.
Because Dr. Truong trained with an expert in France, Stanford Children’s is somewhat unique in the United States for performing the rib cartilage graft reconstruction in two surgeries instead of the traditional three or four. During the first surgery, rib cartilage is harvested and the framework of the ear is created. Most children have a remnant of an ear, and that remnant is used to create the fleshy part of the ear.
“Our method stacks cartilage so you get a more natural form of the ear, and the ear construct has realistic detail to it. Something unique to us is that we create a 3-D printed model of the missing ear from a mirror image of the existing other ear in unilateral (one-sided) microtia, then we use the model during surgery to guide us as we carve each detail of the ear,” Dr. Truong adds.
Jensinne recently finished surgery on one of her ears and is awaiting the second surgery on the other ear. This will occur four months after the first, allowing cartilage to grow and a healthy blood supply to become established. In the second surgery, Dr. Truong and her partner Kay Chang, MD, will elevate her ears off of the side of her head with skin grafts, so that her ears will naturally project outward, and at the same time implant a hearing device through the same incisions.
“We are implanting a new, exciting hearing device in Jensinne. The device brings the hearing aid under the skin, so hearing is much better, and the outside device is much smaller and flatter, and attached by a magnet instead of a screw,” Dr. Truong says. “It will help eliminate skin infections for Jensinne.”
Because Jensinne had the more unusual bilateral microtia, the doctors used ear models from previous patients and matched the ears to her head shape. They picked cute, small ones to complement her face.
“It’s amazing to see her ears develop. It’s just life changing,” Jacqui says. “You can see the confidence that’s coming. She wears her hair up now, and she can’t wait to wear earrings.”
What’s great is that Jensinne’s ears are living tissue with feeling and blood flow. In other words, they are truly a part of her. That’s not always the case with microtia surgery.
Rounding out the family with Ellis and Eliana
Jacqui continued her work overseas at orphanages. That was when she met a 6-year-old boy with spina bifida. Despite struggling to get around, he was taking care of a 3-year-old girl with cerebral palsy.
“He was clothing her, feeding her, and protecting her. It was incredibly touching. So we brought Ellis home, and two years later we brought Eliana, the little girl with cerebral palsy, home,” Rodney says.
Ellis had a very large curve in his back, and he recently had corrective surgery at the state-of-the-art Children’s Orthopedic and Sports Medicine Center with Lawrence Rinsky, MD, chief of orthopedic surgery. The couple truly appreciates the nurses and the social workers helping them prepare to bring Ellis home after surgery with his array of needs, including physical therapy and occupational therapy.
“It’s amazing to see him sitting up straight,” Jacqui says. “There are just so many people that touch our lives when we go to Stanford Children’s.”
Eliana is cared for by James Gamble, MD, an orthopedic surgeon, for the orthotics that enable her to walk with cerebral palsy. He also sees Ellis, who receives regular care for his dislocated hips and orthotics. He and Dr. Rinsky used to go to China together on medical missions.
“Ironically, it was Dr. Gamble who did the amputation for Jadyn years ago in China, and now Jadyn is one of his patients today,” Jacqui exclaims.
The perfect partnership between a family and a hospital
The family’s lives are intertwined with Stanford Medicine Children’s Health. Living nearby played a major role in their decision to start adopting in the first place. Collectively, the kids see dozens of specialists at Stanford Children’s. Doctors help the family by scheduling appointments and surgeries back-to-back so that the family isn’t constantly staying at the hospital or running back and forth.
“We feel very blessed to live nearby. In fact, you can put our home address down as Stanford Children’s Health,” Rodney quips. “Seriously, though, we are so grateful to Stanford Children’s for your skills, your talents, and especially your hearts.”
Despite being a global director of the world’s largest logistics company, Rodney estimates that all the hospital stays and surgeries for his kids add up to months spent at Stanford Children’s—often as vacation time from work. Yet, he doesn’t mind. He appreciates the exceptional, personalized care that we give his kids, and he finds peace at the chapel. The children enjoy the fun side of stays, including child life specialists and the teen lounge.
“Stanford Children’s is the right place to care for the Moore family because we have cutting-edge specialists in all of the major subspecialty surgical and medical fields, so all the kids can get whatever highly complex care they need under one roof,” Dr. Sidell says. People ask the Moores how they do it—not only care for six children, but six children with special needs. They attribute their success to their faith as well as the kids themselves, who help and support each other, something they learned in their orphanages. Yet, it’s also something their parents intrinsically teach them, every day. After all, they are truly superhumans, in the best, most genuine sense of the word.
Learn more about Pediatric Otolaryngology — Head & Neck Surgery (Ear, Nose, and Throat) >
