Transplant for Toriana
Toriana Douglas Photo by Jana E. Pye
Darlington girl with Biliary Atresia plans for liver transplant
By Jana E. Pye, Editor, editor@newsandpress.net
Toriana Douglas has endured constant doctor’s visits, tests, and hospitalizations in her short nine years, yet she exudes a quiet strength that inspires all who meet her.
When asked how long she has had her illness, she replied softly, “Since I was a baby.”
Toriana was diagnosed with Biliary Atresia at her two week checkup by her pediatrician, Dr. Bardi.
“He noted that her skin and eyes were yellow,” said her mom India Dargan, a teachers assistant at St. John’s Elementary School. “He ordered lab work to be done at McLeod Hospital, and he said he would call me back. I noticed he put STAT on the lab work,” she said. “He called back an hour later and said her bilirubin is too high for her age, and told me that MUSC would be calling me with a bed for her, and we had to be ready to go. They called two or three hours later and said, ‘We need you to be down here at 5:30 a.m. in the morning. You can’t be late.’ So we went down to the Children’s Hospital at MUSC in Charleston.
After hours of testing and an ultrasound, the team of doctors confirmed the diagnosis of biliary atresia; her tiny liver was unable to produce bile.
“Toriana needed a procedure called a ‘Kasai Procedure’ to go around the damaged bile ducts and try to restore the flow of the bile from the liver to the gut,” remembers India. “There was no time to spare.”
“The surgery lasted for hours. Finally the surgeon and about ten or twelve doctors came back in and he was shaking his head. I thought it was something bad, and he said ‘She made it out. I don’t know how she did it- it wasn’t me that did it, it had to have been God.’ That was just how badly her liver was damaged.”
After a two week stay in Charleston, the infant was discharged and placed on numerous medications, many of which she takes to this day. Her list of medications is nearly 13-14 different medications taken twice a day, all keep her as healthy as possible until the inevitable surgery that will be performed when her body is old enough – and strong enough- to support a liver transplant.
“Her doctor said that 85% of the kids that have Biliary Atresia have to have a transplant before they reach age 12,” said India. “He knows she is going to have to have one, but not sure when. It could be a month from now, or two years from now, who knows- but her team wants us to be prepared because there will be a lot of expenses. After she has the transplant and they let her out of ICU, and is in a regular room, once she is discharged, she can’t come back here to Darlington. She will have to stay within 5 minutes of the hospital so they can keep a closes watch on her to make sure her body does not reject the new liver.”
According to MUSC, many families prepare for eventual transplant surgeries by fundraising for the expenses incurred, including paying for housing that could take from anywhere to two to three months. Some families stay in hotels, while others rent an apartment for more room for other family members to come visit and have a more “home-like” atmosphere while their children recuperate.
“Toriana has a large network of family support in the area, something that is a great blessing to us,” said India.
Toriana’s father is Torrie Douglas, and her paternal grandparents are Mitchell and Denise Douglas, all of Society Hill.
Maternal grandparents are Tammy Wright, and James and Helen Dargan, and great granmother Juliette Wright Lloyd and the late Nellie Dargan Woods. Her god parents are Timothy and Terminka Jackson. She also has a special aunts and uncle, Michael and Monica Lloyd, and Tyeshia James, who are helping with various fundraising efforts.
Last summer, Toriana was surprised with a gift from the Make a Wish Foundation, who paid for a trip for seven days to Disney World at the Give Kids the World village for she and her younger siblings, sister, An’Niyah age 5, and two brothers, Zion, age 7, and L.J., who is a year old.
“Before the kids leave, they go to a big room with stars on the ceiling,” said India. “The child gets to write their name on the star and shoot the star up in the ceiling and can come back at any time and find their star. It was such a great experience for her. We got to meet a lot of different families with kids with a lot of different illnesses that we never even heard of. They have a lot of volunteers there they are all really nice.
We had passes to all the parks in Florida, and a free passport for a year to all the parks like Six Flags and Carowinds Busch Gardens she can go for free.”
Although that trip was great fun, the day-to-day issues dealing with the disease are far removed. She endures a side effect from her medications, including itching that sometimes is unbearable. Sleeping is difficult, and she is now currently trying melatonin to get more sleep at night. Other medications cause drowsiness, making scheduling outings difficult. In addition, her immune system is fragile and after a major medical scare last November, her transplant team at MUSC decided it was safer for Toriana to be placed on homebound for her schooling.
Although she misses her friends at St. John’s Elementary, she enjoys visiting the local Darlington library where she meets her homebound teacher, and keeps up with her schoolwork.
Her hospitalization was severe enough that it was almost “time” for the eventual transplant. She experienced a very painful medical episode that included internal bleeding that resolved itself before the team of doctors could seek the source or cause, something that frequently occurs with medically fragile children. Because of this, it is no longer an option for her to be treated at local hospitals- she must go straight to Charleston with any issues, since that team has her varied medical charts and medical plans at easy access for the special care she requires.
She was placed on Homebound after she was hospitalized in November of 2014.
She also has sleep apnea, and sees a sleep study doctor in Mt. Pleasant. She will get a chance to see a new doctor coming to MUSC from John Hopkins on July 2nd that specializes in biliary atresia.
“Some people don’t realize how serious her disease is, and that she will not outgrow it,” said India. “I don’t think even Toriana really understood until just recently. A week or two ago. I had told her she had an appointment with the dietician, her sleep study doctor, and another appointment with the transplant team and the doctor from John’s Hopkins and she asked me, ‘Is there a cure for biliary atresia?’ and I said No, and she said, ‘Oh, my God,’ that was so hard to hear. I’ve had people tell me they think I’m strong to have a child that is this sick and three others to care for, but I tell them I just pray and have faith that it will all work out. My kids mean everything to me, and I love them so much. I just know that God is watching over Toriana.”
India continued: “Sometimes when she gets a lot of tests and has to have blood work done, she says, ‘I’m tired of getting this done. I wish I could be normal.’ When she is having a tough day, Toriana never complains, I can see her force herself to act like she feels okay. She just wants to be a normal little girl.”
Toriana said if she had two more wishes, the first one would be to have her own room, and the second would be to meet China McClain.
“She’s a singer, and an actress.” said Toriana.
China Anne McClain, 16, is from Atlanta, GA and plays on the Disney Television Series A.N.T. Farm and was featured in the Disney film “How to Build a Better Boy”, Tyler Perry’s television series “House of Payne”, and his film “Daddy’s Little Girls” appeared in other films. She is also a singer-songwriter, dancer, and member of the group McClain.
Unfortunately she was not at Disney in Florida when the family visited last summer, but Toriana holds out hope that one day she will meet China.
She also loves playing on the computer, tablet, read books, draw, do art, and play with Barbie dolls and American Girl dolls.
When I asked Toriana if there was anything else she would like to share about her disease, or her transplant, or anything at all that she would like others to know.
“Well,” she said, looking over at her Mom. “There is something, I know she is scared of it, but I really want it…I want a puppy.”
“Oh, goodness,” laughed India. “My uncle has a Shi Tzu, and she really likes that dog, it’s small and easy for her to handle. I admit, I am scared of dogs, but I have been looking for. I think a small one would be good for her. At MUSC, they bring animals in for therapy for the kids and they always bring dogs over for her.”
“I just like puppies,” continued Toriana. “It doesn’t matter what size they are. I just love them.”
When Toriana goes back to MUSC on July 2nd, she will have some new ultrasounds done to see if the liver is stable enough to hold off sugery for a while longer. “They like kids to get a little older so they can take it, “ said India. “That is why she is taking all these medications now to help her body to be prepared. She takes a lot of vitamins, and we are working hard to keep her healthy. Even after the transplant, it won’t be over. Many don’t take, and second transplant must be done.”
The road ahead is not certain, but Toriana and her family know that it won’t be long before the transplant surgery will occur.
“Even on her bad days, she still pushes. She says, ‘Mama don’t worry about it. Let everything work itself out,” said India. “When she was in the hospital, I couldn’t sleep and was up walking around. Toriana woke up and looked at me and said, ‘Mama just go to sleep. It’s gonna be alright.’ And with faith, it will.”
Toriana recently met the Darlington City Police Department, who have pledged their help to her and her fundraising efforts for her upcoming transplant surgery.
Chief Danny Watson, known for his love of kids, was immediately taken with Toriana’s will gather help from his team and the Darlington Fire Department and other friends will plan a Bucket Drive on the Public Square later this summer to help. [Editor’s note: News and Press will alert readers as soon as that date is available.] Chief Watkins recommended adding her name to the I Will Run for You group, and her runner was just chosen Mari Gonzalez Cruz from Tampa Florida, who has been running for three years.
To donate towards expenses related to her liver transplant surgery, readers may mail contributions to the Toriana Douglas Organ Transplant Fund, Bank of America, 265 S Irby Street, Florence, SC 29501. Phone: 843-678-3229.
She also has a GoFund Me page: Toriana’s Liver Transplant/Expense