Miracle of Births : Woman Defies Odds Associated With Rare Disease--Twice
For 13 years, Shelley Ybarra has been living with Wegener’s granulomatosis, a rare, progressive disease that eats away normal tissue and has collapsed most of her respiratory system, making even a climb up a flight of stairs difficult.
Doctors told Ybarra, who takes daily medication that can cause infertility, that she would never be able to have children. But the Irvine woman defied astronomical odds for the second time just after Thanksgiving when she gave birth to a healthy boy 15 months after delivering his brother.
According to experts with the National Institutes of Health in Bethesda, Md., fewer than 20 U.S. women with Wegener’s disease have ever become pregnant, and fewer than 10 have succeeded in giving birth.
“We were completely shocked when we found out I was pregnant again,” the 27-year-old woman said. “We cried because we were so happy for this second miracle. But we were scared and not sure whether the baby would be healthy.”
Doctors gave Ybarra only a 50% chance of surviving either pregnancy and said her medication could jeopardize both children’s health. When Ybarra and her second husband married two years ago, they considered adopting. But when the unexpected pregnancies came, they decided they were blessings worth the risks.
“We thought even if the baby wasn’t going to be 100% healthy, we would still love it,” said Ybarra’s husband, Peter. “We felt this was a second gift from God.”
An autoimmune system disorder, Wegener’s granulomatosis affects an estimated two or three of every 100,000 people, according to medical authorities. It can cause inflammation in a variety of tissues, causing damage by restricting blood flow, primarily in the respiratory tract and kidneys. The disease can occur at any age among both men and women. It is not hereditary and its cause is unknown.
“This is a serious disease,” said Dr. Michael Sneller, head of the National Institute of Allergy and Infectious Diseases. “The body essentially attacks itself and is susceptible to infection.”
When Ybarra was 14, she began suffering severe flu-like symptoms, such as persistent coughing and bloody noses. Because a treatment for Wegener’s was discovered just 10 years ago, she shuffled between half a dozen doctors after her condition was diagnosed.
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Ybarra’s condition worsened over the years, leading to temporary loss of sight, smell and taste. She later developed permanent arthritis, hearing loss and major lesions in her lungs that restricted her breathing capacity. She now wears hearing aids and becomes short of breath after merely walking to a neighbor’s house.
“My trachea is so small, it’s like breathing through a straw,” Ybarra said with a soft wheeze in her voice.
“I have no immune system. People think I’m a germ freak because I wash my hands often and am very careful about sharing drinks. But I have to take care of myself and my children.
“No one else should shoulder my worries. I don’t want to be a burden to my family,” she added, while feeding her newborn son, Alex, who weighed 7 pounds, 10 ounces at birth on Nov. 29.
Simple activities are tiresome and even impossible for Ybarra. No longer can she enjoy a swim at the beach or a bike ride through town.
“Sometimes I see the water and I just want to dive into it. I miss that. I can’t even take walks around the park,” Ybarra said.
But Shelley Ybarra is never short of energy and spirit, said her mother, Lynda Joy.
“If I even have a cold, I get grumpy. In Shelley Ybarra’s condition, she is sick every day of her life. But she never complains. She lives every day to the fullest,” Joy said.
To prevent further damage to her weakened immune and respiratory systems, Ybarra takes Imuran, a drug that induces sterility in 60% of patients with Wegener’s disease, NIH experts said.
For a long time, Ybarra and her mother traveled between half a dozen hospitals, only to be told there was no hope for children and a future. But then, during her first marriage, Ybarra and her husband conceived a child. She lost the child 12 weeks later when she miscarried.
“I thought that pregnancy was a fluke,” Ybarra said.
Shortly after the miscarriage, her first husband left her.
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Ybarra said she has accepted the limitations the disease places on her. She continues to work two jobs--as a sales representative for a label company and as an assistant at Hoag Memorial Hospital Presbyterian’s clinic in Woodbridge.
She met Peter Ybarra four years ago, and the couple married in 1992. Peter Ybarra said his wife’s disease never stopped them from planning a family. They were set on adopting a child until 15 months ago, when Ybarra became pregnant with her first son, Austin.
“We were very doubtful about her first (positive) pregnancy. She had a lot of problems and could only breathe with half a lung for herself and her baby,” said Dr. Craig Towers, a high-risk pregnancy specialist. “But it turned out to be a great success. She’s someone I am always going to remember, because she probably will be the only Wegener’s patient I will ever treat.”
Uncertain of how long her health will hold up, Shelley Ybarra said she can only live from day to day. She is both cautious and confident about her family’s future.
“What scares me most is to know that I may completely lose my hearing and never be able to hear my kids call for me,” Ybarra said, as her husband sat beside her, sobbing. “But having the children were the most joyous moments in my life. Things can only get better with these two kids in the world.”
