Home
» City specials
» Hangzhou
Baby Hu born to a life of injury
By Zhang Qian |
April 20, 2010, Tuesday
|
Print Edition
Print Edition
WATCHING over her sleeping son, Gao Lijuan puts her hand over his head to check his temperature. She does it from time to time to ensure that the boy's body temperature won't rocket unexpectedly as it has done often over the past 10 years.
Born unable to perspire or to feel pain, Hu Fengyi has made it to 10 years old despite countless incidents of having been rushed in his mother's arms to various hospitals.
And this time, he has been diagnosed in Shanghai as suffering from the degenerative Charcot's arthritis after months of edema in his knees early this year.
Doctors have advised that nothing can be done for the ailment in the next 10 years until Hu's bones are fully grown and can sustain the necessary knee surgery.
All they can do is to apply braces to support his knees to prevent edema aggravation.
TCM herbal remedies may help relieve the ensuing fluid buildup. Hu cannot stand on his own and has to be carried on the back of his mother or father to move.
"I knew that the doctor was right, but it is difficult to accept that so much misfortune has happened to my son," says Gao, 38.
"All I can do is to protect him as much as I can. With so many unexpected nightmares in the past 10 years, I just cannot imagine what will come up next. But I will never give up."
The Hu family - from a village in Xiaoshan District of Hangzhou - hasn't had much to cheer about since the boy was born in September 2000.
He got a high fever nine hours after his birth. Finding Hu was unable to perspire, the doctors first suspected immature pores, but soon ruled that out.
An immature body temperature system may have led to the perspiration problem, according to the doctors.
Hu's fever stayed high for 27 days despite the medication he was given. Eventually, his parents were advised to go home and try reducing the temperature with exercise.
But living in a rural area in Xiaoshan District, the electricity supply at Hu's home could not support continual running of air-conditioning. The couple had to search for cool places outside for the baby, such as supermarkets and hotels with air-conditioning.
And after midnight when these options were shut, the father rode his motorbike with the mother carrying the baby on the back to let the wind motion cool him.
"We always have to monitor his temperature. The moment it climbs, we put him in mildly warm water to cool him down," says Gao. "Any negligence can lead to fatal problems for him."
Gao will never forgot the high fever that greatly damaged Hu's intelligence when he was only four months old.
Keeping Hu cool is not the only big task for Gao. She also has to keep an eye on the boy lest he hurt himself.
Gao was astonished to find blood on his bed sheets when she had just finished washing the diapers downstairs on a summer afternoon in 2001.
Hu bit his hands so much they started bleeding and it seemed he didn't feel any pain at all. And since then he has accumulated scars from biting and scalding and fractured his bones. The parents keep a medicine chest stocked for the frequent emergencies that arise.
"Hu's case matches the typical symptoms of congenital insensitivity to pain with anhidrosis," says Dr Wang Zhiping, chief physician of the Neurology Department at Shanghai Children's Medical Center.
It is a rare genetic peripheral nerve problem, Dr Wang says.
The patients tend to die early as they feel no pain and cannot protect themselves from harm.
They may bite their own finger off, and scald themselves with boiling water with no awareness at all.
And since Hu's intelligence is damaged, he won't accumulate self-protection awareness with age, which means that he will continually hurt himself almost unconsciously.
People have advised Gao to give up on her son and try giving birth to another baby. But she has refused.
"He cannot live without me," says Gao. "I am so sorry that I failed to provide my son a healthy body, how can I abandon him when he needs me?"
To take care of Hu, Gao quit her job at a local factory and the family has to survive on her husband's income. She accompanied Hu to school when he was admitted to a local primary facility.
"I don't expect that my son will have a big future. I only hope that he will get more happiness in the company of kids his own age," says Gao. "My presence may keep him safe at the same time."
But Gao's 24-hour care cannot keep Hu safe.
He has suffered from recurring inflammation in the joints since 2007.
Medication for medullitis failed to relieve the problem.
And continuous collapsing of his right knee robs Hu of the ability to stand and walk.
Hu was diagnosed with Charcot's arthritis by Dr Dai Kerong at Shanghai No. 9 People's Hospital after consultations at various hospitals in Hangzhou, Beijing and Shanghai.
The bad news is that there is nothing that can be done until Hu is fully grown.
"I will try any possible treatment for my son at whatever cost," says Gao. "My son is only 10 years old, there is so much he hasn't experienced."
Gao is therefore hoping for help from medical experts will make herson's life easier.
Born unable to perspire or to feel pain, Hu Fengyi has made it to 10 years old despite countless incidents of having been rushed in his mother's arms to various hospitals.
And this time, he has been diagnosed in Shanghai as suffering from the degenerative Charcot's arthritis after months of edema in his knees early this year.
Doctors have advised that nothing can be done for the ailment in the next 10 years until Hu's bones are fully grown and can sustain the necessary knee surgery.
All they can do is to apply braces to support his knees to prevent edema aggravation.
TCM herbal remedies may help relieve the ensuing fluid buildup. Hu cannot stand on his own and has to be carried on the back of his mother or father to move.
"I knew that the doctor was right, but it is difficult to accept that so much misfortune has happened to my son," says Gao, 38.
"All I can do is to protect him as much as I can. With so many unexpected nightmares in the past 10 years, I just cannot imagine what will come up next. But I will never give up."
The Hu family - from a village in Xiaoshan District of Hangzhou - hasn't had much to cheer about since the boy was born in September 2000.
He got a high fever nine hours after his birth. Finding Hu was unable to perspire, the doctors first suspected immature pores, but soon ruled that out.
An immature body temperature system may have led to the perspiration problem, according to the doctors.
Hu's fever stayed high for 27 days despite the medication he was given. Eventually, his parents were advised to go home and try reducing the temperature with exercise.
But living in a rural area in Xiaoshan District, the electricity supply at Hu's home could not support continual running of air-conditioning. The couple had to search for cool places outside for the baby, such as supermarkets and hotels with air-conditioning.
And after midnight when these options were shut, the father rode his motorbike with the mother carrying the baby on the back to let the wind motion cool him.
"We always have to monitor his temperature. The moment it climbs, we put him in mildly warm water to cool him down," says Gao. "Any negligence can lead to fatal problems for him."
Gao will never forgot the high fever that greatly damaged Hu's intelligence when he was only four months old.
Keeping Hu cool is not the only big task for Gao. She also has to keep an eye on the boy lest he hurt himself.
Gao was astonished to find blood on his bed sheets when she had just finished washing the diapers downstairs on a summer afternoon in 2001.
Hu bit his hands so much they started bleeding and it seemed he didn't feel any pain at all. And since then he has accumulated scars from biting and scalding and fractured his bones. The parents keep a medicine chest stocked for the frequent emergencies that arise.
"Hu's case matches the typical symptoms of congenital insensitivity to pain with anhidrosis," says Dr Wang Zhiping, chief physician of the Neurology Department at Shanghai Children's Medical Center.
It is a rare genetic peripheral nerve problem, Dr Wang says.
The patients tend to die early as they feel no pain and cannot protect themselves from harm.
They may bite their own finger off, and scald themselves with boiling water with no awareness at all.
And since Hu's intelligence is damaged, he won't accumulate self-protection awareness with age, which means that he will continually hurt himself almost unconsciously.
People have advised Gao to give up on her son and try giving birth to another baby. But she has refused.
"He cannot live without me," says Gao. "I am so sorry that I failed to provide my son a healthy body, how can I abandon him when he needs me?"
To take care of Hu, Gao quit her job at a local factory and the family has to survive on her husband's income. She accompanied Hu to school when he was admitted to a local primary facility.
"I don't expect that my son will have a big future. I only hope that he will get more happiness in the company of kids his own age," says Gao. "My presence may keep him safe at the same time."
But Gao's 24-hour care cannot keep Hu safe.
He has suffered from recurring inflammation in the joints since 2007.
Medication for medullitis failed to relieve the problem.
And continuous collapsing of his right knee robs Hu of the ability to stand and walk.
Hu was diagnosed with Charcot's arthritis by Dr Dai Kerong at Shanghai No. 9 People's Hospital after consultations at various hospitals in Hangzhou, Beijing and Shanghai.
The bad news is that there is nothing that can be done until Hu is fully grown.
"I will try any possible treatment for my son at whatever cost," says Gao. "My son is only 10 years old, there is so much he hasn't experienced."
Gao is therefore hoping for help from medical experts will make herson's life easier.
- About Us
- |
- Terms of Use
- |
-
RSS - |
- Privacy Policy
- |
- Contact Us
- |
- Shanghai Call Center: 962288
- |
- Tip-off hotline: 52920043
- 沪ICP证：沪ICP备05050403号-1
- |
- 互联网新闻信息服务许可证：31120180004
- |
- 网络视听许可证：0909346
- |
- 广播电视节目制作许可证：沪字第354号
- |
- 增值电信业务经营许可证：沪B2-20120012
Copyright © 1999- Shanghai Daily. All rights reserved.Preferably viewed with Internet Explorer 8 or newer browsers.
