Her father, David Rogers, was sitting at her bedside. She told him his sister and her aunt, Kellene, who had died years earlier, had comforted her and told her she needed to survive.
"I remember telling my dad I wasn't going to die," said Rogers, 36. "I wasn't going to die. My aunt, Kellene. She was talking with me. She was with me the whole time, I knew I wasn't going to die."
That brush with death occurred in 1995 when Lillian Rogers was pregnant and fighting pneumonia and a kidney infection that had spread into to her bloodstream.
The baby didn't survive. Doctors were surprised that Lillian Rogers did.
"Her chest was no longer full of fluid, and they said they didn't know what happened," said Dianne Dickerson, Lillian Rogers' mother.
It's been a life of surgeries for Lillian Rogers. Since her birth in March 1975, she has stayed at the hospital more than 100 times and had 66 surgeries. She is sharing the story of her struggles on Rare Disease Day, an annual day to highlight the lives of people who have suffered through devastating conditions. It's usually observed on Feb. 28.
Rogers was born with unexpected medical problems that caused doctors to give her only a 5 percent chance of survival, Dickerson remembers. They found her daughter's trachea was not connected to her esophagus and anything she would have had to drink would have gone into lungs.
"They told me she can't swallow her secretions and it would be best if you just put her in the nursing home until she dies," Dickerson said.
Her parents refused and instead found a doctor at Children's Hospital in Seattle who could perform a surgery to use tissue from Rogers' trachea to fix her esophagus.
That was the first surgery that saved her life, Rogers said. As a baby, she had several other surgeries that included procedures to fix clubbed feet and a birth defect involving her rectum.
A geneticist at Children's Hospital first used the term VATER association before her daughter was a year old, but didn't explain it thoroughly, Dickerson said. Shortly after that, while working as a unit assistant at the hospital, she found a description of the disease with a doctor's help.
Rogers was diagnosed at 2 with VATER, now also known as VACTERL association, which is called an association because it's a group of birth defects. People who have been diagnosed with the disorder can have a combination of medical issues including problems with the spine, heart, and kidneys, an abnormal connection between the esophagus and the trachea and limb abnormalities, among other characteristics.
VATER association was first recognized in the early 1970s and is typically diagnosed in patients with three or more congenital malformations associated with the disorder. It is considered to be a rare disease that affects from around 1 in 10,000 to 1 in 40,000 infants. Causes of the disorder vary significantly from one patient to the next, said Ben Solomon, a doctor at the National Human Genome Research Institute in Maryland, who is leading a clinical and genetic study of VACTERL association.
"It's a very heterogeneous disorder," Solomon said. "It's often recognized at birth, but we have come across a number of folks where it wasn't diagnosed until later."
As a child, Lillian Rogers had a surgery to remove her right kidney and several surgeries to try to fix her bladder. The organ never fully developed and at the age of 16, Rogers called several doctors offices in search of someone who could build a new bladder in her lower abdomen.
Rogers said the experience taught her how to be her own health-care advocate, a lesson that has served her well into adulthood when working with medical professionals who have never heard of VACTERL association.
Her most recent stay in a hospital was three weeks ago for a kidney infection.
"My nurse came in and said no one here has heard of VATER association so we printed out information offline and we're passing it around so the people who take care of you will know what it is," Rogers said. "It's not very well known. But I know enough about it as I should being the patient to know how it affects me in certain situations."
Rogers expects that one day she may need a kidney replacement. She also suffers from severe back pain that she suspects may be connected to her disorder. She wants to help doctors learn more about the long-term affects and causes of VACTERL association and plans to enroll in the study led by Solomon.
"I'm hoping if I do the study that I can help somebody and have it not be as hard of a road for them as I've had," she said.
Amy Daybert: 425-339-3491; firstname.lastname@example.org.
Rare Disease Day 2012
The National Organization for Rare Disorders and other organizations worldwide are observing Rare Disease Day today. The day is to focus attention on the needs of patients and families affected by rare diseases. More information is available at www.rarediseaseday.us.
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