Risk looms as ALS sufferer’s due date nearsSouce:Xinhua Publish By David K. Barger Updated 22/01/2013 1:24 am in Health&Lifestyle / 2 comments
BEIJING, Jan. 21 — A woman with Lou Gehrig’s disease is due to give birth soon, but she is still not sure whether any hospital in Beijing will take the risk of performing a Cesarean section on her.
As a teenager, Lyu Yuanfang, 31, was diagnosed with Lou Gehrig’s disease, also known as amyotrophic lateral sclerosis, or ALS, a fatal, incurable neuromuscular disease that progresses rapidly.
A native of northwest China’s Gansu Province, she arrived in Beijing with her husband Luo Zhongmu last month and rented a home in the city’s northeast Chaoyang District. Since then, she has been searching for medical facilities willing to assist her delivery.
“We don’t know anyone here in Beijing, and all the hospitals we visited said they were unable to operate on an ALS patient,” Luo told Xinhua in an interview on Monday.
Lyu is now 34 weeks pregnant and test results show that the fetus is healthy. Doctors have urged her to have a C-section before the fetus reaches 36 weeks, in case her own health deteriorates and threatens both herself and the baby.
Before they arrived in Beijing, a Sino-Canadian joint-venture hospital for women and infants offered Lyu free prenatal tests and delivery services.
But after a series of tests, the hospital’s management decided Lyu’s case was too risky, as the hospital has neither the proper equipment nor respiratory and neurological disease specialists.
“We readily agreed to help and exempt her from all medical charges, because we did not know her case was so serious,” a senior manager of the hospital said on condition of anonymity. “We are apparently not qualified to perform China’s first Cesarean section on an ALS patient.”
Wu Shiwen, a neurologist with the General Hospital of Armed Police Forces, said Lyu’s disease may cause respiratory system failures during delivery.
“The risk is high — actually it’s too risky for an ALS patient to be pregnant at all,” said Wu.
However, knowing her disease is fatal, Lyu felt it was important to have a child to keep her husband company after she dies. “The child will make our family complete like all other families, and this is the happiest thing I can think of.”
The couple met in an online chat room in 2009. Luo, a native of south China’s Guangxi Zhuang Autonomous Region, was working in a chemical plant in Hangzhou, capital of coastal Zhejiang Province.
They married in 2011, despite the objections of Lyu’s parents, who believe their daughter’s very existence is a miracle.
When Lyu was 12 weeks pregnant, she was given a DNA test that included amniocentesis, a process in which doctors test the fluid surrounding the fetus to determine whether the ALS gene can be passed on to the child.
The test results were negative and subsequent prenatal checks have indicated a healthy fetus.
The couple’s plight has been covered by Chinese newspapers and TV stations, arousing widespread attention. Many web users have offered a helping hand, either by donating cash or contacting hospitals on the couple’s behalf.
They have very little money saved and no idea how much the delivery will cost.
Lyu’s father is partially blind and her mother earns just 500 yuan (about 80 U.S. dollars) a month as a janitor. Lyu has two younger brothers, one of whom is also an ALS patient. Her other brother is still in junior high school.
There are currently about 200,000 ALS patients in China. Since treatment is expensive and not covered by most social welfare programs, many are forced to forego care.
ALS strikes one to three people in every 100,000. Patients progressively lose muscle strength, eventually becoming paralyzed and unable to speak, move, swallow or breathe. British scientist Stephen Hawking is one of the more famous people with the disease.