he first step was a tentative, barely perceptible movement.
But with the help of her mother and a specialized walker, Lilliana Dennis soon shuffled her feet and scooted across the carpet. Her parents cheered her on, helping stand her up and turning her around when she reached a barrier such as a couch or a chair.
“She has a long way to go, but everyone seems very confident that she’ll get that,” said Rhonda Dennis, Lilliana’s mother.
Considering that Lilliana has defied odds even surviving to her first birthday, her parents and therapists are justified in being optimistic.
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Lilliana, now 4, suffers from Trisomy 18, a genetic disorder that often results in death within the first week of life. Only 8 percent of children with the condition live past their first year.
But her parents, Russ and Rhonda Dennis, fought to have open-heart surgery for their daughter, eventually pleading their case in front of a hospital ethics board. The procedure saved her life.
Though Lilliana’s struggle is ongoing, her parents hope that she can serve as a symbol of hope for other families struggling with the devastating diagnosis.
“We have not only tried to speak with them, but we’ve ministered to them, as well,” said Russ Dennis, president of Heritage Bible College in Franklin. “In that way, we’ve gotten to know many of these families.”
Lilliana has not only survived longer than anyone suspected, but has thrived.
Her cognitive and physical development is flourishing.
She attends preschool, as well as specialized education at the Jackson Center in Mooresville. Movement therapy and repetition of skills such as crawling, eating and walking, provide additional skills to live independently.
Physically, her core muscles have become stronger, allowing Lilliana to sit up on her own. Before she started therapy, she couldn’t even hold her head up, Rhonda Dennis said.
Therapists have worked on developing leg strength, and she can now stand in a corner or against a wall for up to five minutes.
Lilliana cannot speak, but has started making sounds and expressions that indicate that she is trying to communicate.
“She doesn’t speak English, she speak Lill-ish,” Russ Dennis said.
More so, they have seen a distinct personality develop in their daughter. She intently watches educational games on her special tablet, follows and grabs for balloons, and gets frustrated during therapy or breathing treatments, pushing it away.
“She loves to tease, and she seems to be very social,” Rhonda Dennis said.
When Lilliana was born on May 17, 2011, she was three weeks early and only weighed 4 pounds, 7 ounces. That small size, along with tell-tale signs, such as fingers and toes the clenched and curled, led doctors to believe something was wrong.
Genetic tests revealed Trisomy 18, a condition similar to Down syndrome. She was born with an extra chromosome, which caused a heart defect, improperly developed fingers and toes, and difficulty breathing.
The Support Organization for Trisomy 18, 13 and Related Disorders, estimates that only 250 children over 1 years old with those chromosomal disorders are living in the U.S.
Because the condition is so deadly, researchers haven’t had time to study how to treat it. Lilliana’s doctors told the Dennises that the only thing they could do would be to take her home and love her for the short time she was alive.
But in their grief, Rhonda and Russell Dennis started researching the condition on their own.
In order to survive, Lilliana would need open-heart surgery to repair her defective valves. Though the girls’ doctors told her parents it was too late to do surgery, they located Dr. Sanjay Parikh, a cardiologist at Peyton Manning Children’s Hospital, who agreed to do the work.
“It’s not just the hospital, it’s the individual doctors that have to agree to do it, as well,” Rhonda Dennis said.
The family also had to convince the hospital’s ethics board, which decides if surgeons and doctors can attempt risky or controversial procedures.
Through impassioned pleading, the board gave it’s approval.
The surgery was performed on Oct. 13, 2011. Lilliana was the first Trisomy 18 patient in Indiana to get the open-heart procedure.
Dr. Gary Wright was one of the members of the ethics board at the time. He attended Lilliana’s fourth birthday party in May, and posted a message about his support for her surgery on her Facebook wall.
“Sadly, the present culture of medicine rejects the aggressive medical care of these children,” he wrote. “The bias within medicine, combined with a growing government intervention in health care may lead to a certain need to ration care. We need to be mindful of the weak and vulnerable in our midst, they are indeed angels unaware.”
Recovery from the surgery was arduous. But the Dennis family has endured few health scares with their delicate daughter since 2011.
She has only required one overnight stay in the hospital in the past three years, when doctors performed surgery to repair a tendon in her thumb, Russ Dennis said.
As Lilliana’s health has improved, she has exemplified the potential that children with Trisomy 18 have had.
Her story was featured in a program called, “Facing Life Head-On,” which profiles people struggling with medical and life issues.
Their inclusion helped connect them with other families dealing with Trisomy 18 all over the country, and has helped provide hope that the diseases is not a death sentence.
The Dennises have attended the annual convention of the Support Organization for Trisomy 18, 13 and Related Disorders, and joined numerous Facebook groups and forums for parents of Trisomy children.
Those associations have not only helped other parents see the potential lives that other babies with these conditions can have, but also put the Dennis family in contact with rare cases where Trisomy 18 children have grown to be teenagers and adults.
“It really helps to be able to talk to other parents who are going through what you might be, and we want to help if we can,” Rhonda Dennis said.
Lilliana Joy Dennis
Home: Southside Indianapolis
Parents: Russ and Rhonda Dennis
What is Trisomy 18?
Trisomy 18, also known as Edward syndrome, is a condition which is caused by a chromosomal defect. It occurs in about 1 out of every 7,000 births.
What causes Trisomy 18?
When a baby is conceived, the father and mother’s genes combining to create a baby with 46 chromosomes in each cell. Trisomy 18 babies have three No. 18 chromosomes instead of the typical two.
What are the characteristics of Trisomy 18?
The major impact of Trisomy 18 is a predisposition to birth defects, a high incidence of infant mortality, and developmental and motor disability in older infants and children. Over 90 percent of children with Trisomy 18 will have a congenital heart malformation.
Typical characteristics of Trisomy 18 include:
- prominence to the back part of the head
- short eyelid fissures
- small mouth and jaw
- external ear variations
- clenched fist with index finger overlapping the third, and fifth finger overlapping the fourth
- small fingernails
- underdeveloped or altered thumbs
- short breastbone
- club feet
- redundant skin at the back of the neck.
Complications from the disease
- feeding difficulties
- gastroesophageal reflux
- slow post natal growth
- kidney defects
- urinary tract infections
- developmental disability
SOURCE: Support Organization for Trisomy 18, 13 and Related Disorders