Experts puzzled by rate of Kula toddler’s growth
A 15-month-old Kula girl may be one of the heaviest toddlers in the world, and doctors have no idea why and how she continues to grow.
Kailani Riggs, who turned 15 months old Thursday, stands 35 inches tall and weighs more than 50 pounds. She wears the clothes of a 10- to 12-year-old child and struggles to stand on her own two feet.
“I’ve never seen anything like it before,” said Dr. Cassandra Simonson, pediatrician at Malama I Ke Ola Health Center.
Simonson has tracked Kailani’s progress since birth and noticed that within the first month she was gaining more than a pound a week. She said she had a bigger bellybutton than normal and worried that it may be infected so the infant was sent to Kapiolani Medical Center for Women and Children on Oahu.
Doctors kept close track of how much milk Kailani was drinking, tested her blood, sought speech and occupational therapy, checked her motor controls and conducted several other tests, but found no abnormalities, Simonson said. She said she is fed a normal amount of food, but gains more than a normal amount of weight.
“She’s seen a lot of nutritionists who come up with meal plans, and the mom is very strict,” Simonson said. “None of that seems to matter. None of it made a significant difference.
“As far as I know, she’s the biggest baby for her age, and it’s by quite a bit.”
Kailani outgrows clothes in a matter of months, and her weight has become too much for her mother to carry. Family members say she has outgrown every stroller on the market and they have sometimes used a shopping cart to push her around.
“She’s been extremely heavy to carry,” said her mother, Melissa Riggs. “I threw out my back so bad that I couldn’t get off the floor or off the bed. It was a miracle that I rested it a day and was able to walk around and continue to take care of her.
“But for about one day I couldn’t even move. I was in tears, and I’m still in a lot of pain.”
Riggs said that she is in constant pain from carrying her daughter, and her husband suffers from back problems too, so he can only hold her for so long. She said she had to quit her job to take care of Kailani because she requires full-time care.
The family has struggled to pay for genetic tests, which its insurance company has continually refused to pay, Riggs said. She said Kapiolani ended up paying for a genetic sequence test that examines over a thousand genes – which came up negative – and she does not know if she will end up having to pay for it later.
A single test takes months to get approved and costs thousands of dollars.
“Kailani’s doctors have written referrals for the testing, but our insurance denied them because they say it doesn’t fit her diagnosis,” Riggs said. “I keep trying to tell them that she doesn’t have a diagnosis, and that’s what we’re trying to find.”
Doctors are now referring Kailani to a children’s hospital at Stanford University in California and awaiting an appointment. The family’s insurance, once again, denied the referrals. To make matters worse, the family is on the verge of living in a tent in a relative’s backyard after recently being told by its landlord to leave its rental unit, Riggs said.
Family members are accepting donations and hoping to hold a fundraiser soon to help pay for Kailani’s trip to the Mainland. Riggs said they have family in California they hope to stay with if they can afford the trip.
“It’s really scary because the rental situation is pretty crazy, as you know,” she said. “I just got a job; I haven’t been working to take care of Kailani, but because it’s such a crisis I was able to get work two nights a week. My husband lost his job a couple weeks ago, but got a new job at Macy’s, so that’s good.
“We’ve been looking for a place, but we don’t have any savings. We’re just making it.”
Simonson hopes doctors at Stanford might be familiar with Kailani’s condition and can find the particular mutation or problem in her DNA. She suspects the issue is in her genes, but does not know where to look.
Answers will need to come soon for Kailani, whose weight is beginning to affect her organs, especially her liver, Simonson said. Over the past eight months, fat has begun to be stored inside her liver and around her heart and other places of her body. The deposits, which can cause damage over time, form because the fat has nowhere else to go.
Kailani could develop diabetes “very soon” and is a “very high risk” to have a heart attack, stroke, kidney failure or other ailments by the time she becomes a teenager, Simonson said.
“Really at any time,” she said. “It’s being monitored just like an adult who’s obese.”
While Kailani faces physical hardships, she has become a spectacle in public.
Riggs said that people regularly stop them on the street, with some pointing, pinching her daughter’s fat or giving them “awkward looks.” She said other children have teased her daughter and other mothers believe she is feeding her too much.
“People are looking at me thinking, ‘She must force feed her baby all the time,’ ” she said. “I honestly don’t even go out as much because people just stare everywhere we go.”
Riggs does not like to think there is anything wrong with her daughter, but she is aware of her complications. She was tremendously grateful to Kapiolani and the numerous doctors who have cared for Kailani.
Simonson said that Kailani is her office’s “little celebrity,” with everyone taking turns holding her.
“She’s a very bright baby,” Simonson said. “She’s smart and a lot of fun to be around, so we really adore her.”
Riggs is hopeful they will find an answer soon.
“She’s just kind of a mystery,” she said. “I’m sure God has some plan for her in this world to be born like this.”
To donate to the family, contact Riggs at 250-2307 or firstname.lastname@example.org.
* Chris Sugidono can be reached at email@example.com.