Starved girl known as LP had to have a heart transplant

When the severely malnourished little girl known as LP was rescued from a locked closet last summer, she still wasn’t out of danger.

Within two weeks the girl, who had been placed in a foster home by the Missouri Department of Social Services, was suffering medical complications after eating too much too quickly.

Seven months later, she was on a waiting list for a heart transplant, The Kansas City Star has learned. And in a phone conversation recorded May 1 at the Jackson County jail, Jacole Prince told a friend that her daughter had received a new heart.

“I don’t know when, I don’t know what time,” Prince said. “They said it came out successful.”

" ... I could get charged with murder ..."

The Star first learned of the girl’s severe heart problems after talking to one of her aunts in May. Since then the newspaper has obtained more than 65 hours of phone conversations between Prince and family members, a former neighbor and the father of LP’s two younger sisters. Phone calls from jail are recorded and considered open records in Missouri.

In those calls, Prince discusses everything from jail food and her frequent segregation from the other inmates to her hope for probation. She says she is still behind bars because of her daughter’s heart issues, which Prince says are hereditary.

Prince repeatedly tells others about LP’s failing heart, that she was on a waiting list in February and March, and that she was taken to St. Louis for the transplant. She also says prosecutors are trying to pin the blame on her.

“And they’re going to try to say, (if) she dies, or whatever, I could get charged with murder,” Prince told her former neighbor in late February. “And I’m like, that don’t even sound right. The whole family has a heart problem.”

No authorities or medical officials involved in LP’s care or the criminal case against her mother would confirm that the girl had a heart transplant or say how she’s doing.

Treatment for 'refeeding syndrome

Her plight raises questions about what happened once she left Children’s Mercy Hospital on June 30, 2012, eight days after she was rescued, and was placed by the state in a foster home.

How much did the malnutrition affect her heart? Was there an undetected genetic heart defect? Did her foster family have enough training and medical knowledge to provide proper nutrition and food portions? And why did the girl’s heart appear to deteriorate so fast?

LP was readmitted to Children’s Mercy early in July 2012, a few days after her initial release, with nausea, bowel problems, anemia and swollen feet. Physicians had treated her for “refeeding syndrome” — a serious condition that can occur after someone begins eating again following a period of starvation or fasting — and she had been released once her condition stabilized. But on the day she was readmitted, she had consumed many more calories than doctors had recommended.

“(It’s ) a concern because she was nutritionally neglected and recently started eating large amounts of food,” said medical records released by the state.

Medical and nutrition experts say that although the inclination may be to provide severely malnourished people all the food they want, health providers know they must go slowly.

“If you introduce nutrients too quickly, the body can’t handle it like it would with a normal person,” said Jean Stork, a registered dietitian who works at the Center for Child Health and Development at the University of Kansas Medical Center. “The body just doesn’t have the reserves and normal functioning to process even a normal amount of nutrition, let alone excessive.”

Prince, now 30, has been charged with felony counts of child abuse, child endangerment and assault in the first degree. She has pleaded not guilty and is being held in the Jackson County Detention Center on a $200,000 cash-only bond, awaiting a December trial.

Prince’s public defender, Curtis Winegarner, declined to comment about the case before trial.

“I can’t talk about her health condition. I can’t ..."

The state first stepped in to protect LP in February 2006 after she was hospitalized for poor nutrition and slow development. She and her little sister were placed in the care of that sibling’s father and under Department of Social Services supervision while Prince worked through a checklist of state housing and parenting requirements.

In 13 months, the state deemed her a better mother and the family was reunited, no longer under the jurisdiction of family court.

LP, who turned 12 on Thursday, weighed just 32 pounds when she was rescued last year after an anonymous caller alerted the state hotline about a young girl kept locked in a closet at Theron B. Watkins Homes in Kansas City.

The 10-year-old girl was emaciated, scarred and bruised.

Authorities said that she had stopped going to school five years earlier and that her mother had kept her hidden inside the apartment, not letting her go outside to play like her two younger sisters.

DSS acting director Brian Kinkade became quiet and appeared to choke up when asked during an interview last month whether LP had undergone a transplant.

“I can’t talk about her health condition. I can’t,” Kinkade said. “The thing I think that is the most important thing we can all do for her is to give her the space to let her be a little girl.

“She needs to be able to go to school and come home and play in the back yard. And that’s so important. She needs normalcy. She deserves that.”

Prince first spoke of her daughter’s ailing heart as early as last September. She had been jailed for three months when she revealed the news to her older brother, Jermak Prince.

“(LP)’s got a heart problem,” she said.

“We’ve got that in our family,” he replied.

Jermak Prince said last week in an interview that their mother died in October 2007 at age 44. He said she was born with a small hole in her heart and refused to get a pacemaker.

The Star obtained Jacole Prince’s recorded phone calls through a Missouri Sunshine Law records request. The calls were made from June 26, 2012, through July 24, 2013.

DSS officials have declined to release the current health status on the little girl or say whether she is improving.

The jail recordings, however, piece together a chain of events and snippets that reveal what court and child welfare officials and prosecutors have been addressing behind the scenes.

Prince indicates in the phone calls that she has received information on her daughter’s case from her attorney, from family members who say they have spoken with social workers, and from Marcus Benson.

The father of Prince’s two younger daughters, Benson has been fighting in family court to regain custody of those girls. He is on five years probation after pleading guilty to child endangerment regarding his knowledge of LP’s abuse.

Benson and Prince spoke on the phone March 20. She told him that she had talked to her public defender the day before.

"(LP) is in St. Louis right now waiting for a heart"

“He said, ‘(LP) is in St. Louis right now waiting for a heart,’” she said. “I just asked him what if her heart stopped instantly or something like that? Can she get a heart right away? He was like, ‘Well, first, they want her to have a young heart.’”

Before obtaining the recorded calls, The Star spoke with Mozita Prince, Jacole’s younger sister, in May.

Jacole “had called and said (LP) was supposed to have a heart transplant or something,” Mozita Prince said. “She said that’s what her lawyer told her. She was real worried about it, because there are circumstances, you know, if it didn’t go well or something and she needed somebody else’s heart, she kept telling them she would be willing to give her hers. But the lawyer said he couldn’t discuss anything with us.”

At one point, Prince said over the phone that she had been told she needed an examination.

“They want me to go to a psychological evaluation because I had asked my public defender if I can give my heart to my daughter if she is in need,” she told a friend this past spring.

Prince also told her family that her criminal case had been stalled because of LP’s health.

“Because of (her) heart problem, they wanted to push the trial date because of that,” the girl’s mom told Mozita Prince earlier this summer. “They was trying to wait on the test results to come back on her biopsy.”

Biopsies are common after a heart transplant to determine whether the body is accepting the new organ.

Last year, 21 heart transplants were performed in Missouri on people younger than 18, according to the Midwest Transplant Network. Four of those patients were ages 11 to 17.

This year, through July 19, there have been just two heart transplants in Missouri for those in the 11-17 age group. According to the Organ Procurement and Transplantation Network, St. Louis Children’s Hospital has performed one heart transplant this year on a child age 11 to 17. The procedure took place in April, and the recipient was a black female.

No one would confirm this was LP. A spokeswoman for the hospital declined to comment.

Pediatric heart transplants are not typically performed in Kansas City. In Missouri, they are performed in St. Louis, at St. Louis Children’s Hospital or Cardinal Glennon Children’s Medical Center.

The cost of a heart transplant is about $1 million, according to Transplant Living, a service of the United Network for Organ Sharing. That includes preliminary testing, the surgery and postoperative recovery costs. The patient also will need a lifetime of medication and follow-up appointments.

The procedure usually takes about four hours, the St. Louis Children’s Hospital website says. The average length of stay in the hospital is 11 days, and the one-year survival rate for children older than 1 who received a transplant at St. Louis Children’s is 86 percent.

Upon recovery, most children are able to attend school and participate in many normal childhood activities, the site says.

In a May 27 call, Prince’s sister was surprised her niece had already received a new heart.

“How is she doing and stuff?” the sister asked. “Do they tell you anything?”

“She’s doing good,” Prince said.

“Oh, that’s good. I’m happy to know that,” the sister said.

“Yeah,” Prince said, “she’s doing real good.”

Heart defects can go undetected

No one will say what went wrong with LP’s heart, or why. Because of federal privacy law, physicians and other medical personnel are prohibited from discussing a patient’s case.

In general, medical experts say, heart troubles can be caused by a variety of factors, including an inherited heart defect, a virus or severe malnutrition.

And even with patients who have had routine checkups and regular medical care, heart defects can go undetected. Sometimes you have to be looking for one to find it, experts said.

“Genetic conditions that affect the heart can actually show up at different times in life and may not be present during early times in childhood,” said Kevin Mulhern, a cardiologist and director of the adolescent and adult congenital heart disease program at University of Kansas Hospital. “We stumble on them in adults.”

The only specific medical information in LP’s case that has been publicly released comes from documents DSS gave to The Star in May. Those records divulge diagnoses and details from LP’s hospital stays in late 2005, early 2006 and after she was rescued from the closet last summer. The state provided no records after July 5, 2012.

• LP was born prematurely on Aug. 1, 2001. Prince told medical personnel years later that her daughter was hospitalized for two to three weeks at birth.

• The girl was admitted to Children’s Mercy in October 2005 after her mom said she had ingested Pine-Sol. At that time, Prince didn’t mention any pre-existing heart condition or other medical concerns in the family.

One medical entry from that time read: “I do not hear significant murmur on exam and doubt she has cardiac dysfunction at this time based on her clinical exam.”

• Nearly three months later, in late January and early February 2006, LP was hospitalized for “failure to thrive,” a serious delay in a child’s growth or development. Prince told medical personnel that she withheld food to keep the girl from going to the bathroom so often.

Again, no significant heart concerns were noted.

“Regular rate and rhythm,” her medical records said. “No murmur. Pulses strong and equal.”

• When LP was rescued in June 2012, she spent a week in the hospital receiving treatment for refeeding syndrome. Three days after her release, she was readmitted to Children’s Mercy. Her foster mom said the girl had wanted to “eat as much as she can get her hands on.”

Medical experts and nutritionists say refeeding syndrome is a serious condition and can be fatal. It depletes essential minerals and vitamins that are not stored in the body but must come from adequate nutrition.

“You have to be very, very careful when you’re getting somebody who’s severely malnourished about how slowly you give them food and fluid until their heart builds back up,” said Deborah Frank, director of the Grow Clinic for Children at the Boston Medical Center and professor of child health and well-being at the Boston University School of Medicine. “Clearly, you would expect refeeding issues with a child who was that starved.

“And one of the things we know is you have to be very careful how you do that because they’ve used up some of their heart muscle and you don’t want to overstrain the heart.”

LP told authorities that before her rescue, she didn’t eat every day. Often, she said, she was fed in the closet or behind a couch. At age 10, she wore a size 2T shirt.

Children’s Mercy records released by DSS show that when LP was admitted on June 22, 2012, physicians and nurses slowly began reintroducing food. On that day, she was restricted to 550 calories.

“Patient at higher risk of heart failure due to refeeding syndrome,” medical notes from that day read.

Over the next several days they increased the amount of calories she was allowed. By June 25 it was 1,250, and when she was released on June 30 she was up to 1,800 calories per day. Medical personnel instructed her foster family on proper nutrition and how to limit LP’s portions, records show.

Kids in the care of the Children’s Division of DSS who are diagnosed with “extraordinary” medical conditions are eligible to be placed in a home that is contracted to provide medical foster care. A DSS handbook says foster parents providing medical care “may receive special training to manage the child’s condition and are required to provide more intensive care to the child than to a traditional child.”

DSS spokeswoman Rebecca Woelfel did not respond to questions about whether LP was placed in a medical foster care home and what training that family had received.

Late on July 3, LP’s foster mother took her back to Children’s Mercy for concerns related to refeeding. Her feet were so swollen that her gait was wobbly, records indicate. The foster mother told the hospital staff that LP had been wanting to eat a lot and a report noted, “Foster mom has been trying to limit her portions to appropriate for her age.”

For breakfast that day, her foster mom told hospital staff, LP had Cheerios, a banana, a little bacon, two bites of toast and a cup of milk.

For lunch, according to hospital records, LP had a McDonald’s cheeseburger, chicken sandwich, chicken nuggets, fries and a strawberry shake. For dinner, she had a cheeseburger, fries and Sprite from Burger King.

By conservative accounting, that adds up to 2,860 calories — nearly 60 percent more than the recommended amount.

Records don’t show how much she ate each day between the time she left Children’s Mercy on June 30 and was readmitted on July 3.

A person who is deprived of nutrients for an extended period can experience a loss of skeletal muscle and organ tissue, said Ainsley Malone, a nutrition support dietitian for Mount Carmel West Hospital in Columbus, Ohio. Malone is also president of the American Society for Parenteral and Enteral Nutrition.

“When you think about those individuals that have succumbed to severe malnutrition,” Malone said, “those folks that have the cardiac abnormalities, generally a lot of that is due to a loss of cardiac muscle mass and the inability of the heart to function.”

“You are amazing, a one-of-a-kind”

LP turned 12 on Thursday.

Dozens of people gathered for a birthday party on the lawn at Theron B. Watkins Homes, where the Prince family lived. Kids played in an inflatable house and met animals in a small petting zoo. Families had hamburgers and hot dogs and signed a card for the girl they have never met but hope to one day.

“I’m going to do this every year,” said organizer Dorothy Burrell. “For every year she was in the closet. And hopefully one year she’ll be able to come.”

Although LP wasn’t there, she will have plenty of cards and gifts — for the second year in a row — from a community of supporters.

A man named Bill sent a Dr. Seuss card with the message: “Why fit in when you were Born to Stand Out?” Inside were the words, “Nobody can fill the place in the world that you do.”

“You are amazing, a one-of-a-kind,” Bill wrote. “Keep on learning and strengthen your mind. Be strong — you will succeed.”

Just like last year, people touched by LP and her story have wanted to reach out to her. Many dropped off cards at the Local Investment Commission, which has collected gifts, messages and donations for the girl since her rescue.

Amber Dickensheets helped organize a card shower for both of LP’s birthdays. She said she wanted the girl to know that Kansas City is behind her and supports her as she grows and learns.

“I hope she is doing well and that her 12th is even better than her 11th,” Dickensheets said. “I pray that LP has found strength in body, mind and spirit over the last year. There are many people rooting for her success.”

This year, she asked members of her church to send cards.

“For Our Little Princess,” said a pink Cinderella card from a 2-year-old named Amelia, who had colored on the inside and back.

“LP — Amelia is excited for you to have a birthday,” Amelia’s mom wrote. “She said, LP’s a girl. I’m a girl. We could play. Happy Birthday. I love LP.”

In the stack was a card with a picture of a birthday cake, sent by a woman named Nancy.

“Prayers for a blessed year and continued learning,” the woman wrote inside. “You are in KC’s heart.”

This story was originally published August 3, 2013 at 10:33 PM with the headline "Starved girl known as LP had to have a heart transplant."