"What is Chubby Willie syndrome?" For this unpopular word, how many people will show a puzzled and confused look after seeing it.
Life is like a reverse journey, the world is far more complicated than we think, and passers-by who pass by you may be carrying a period of hardship and unspeakable secrets.
This is a column for Chubby Willie syndrome, please pay attention to this minority group.
Your child is born with a low blood sugar level and is unable to make sucking motions on their own
On February 8, 2019, at 4 p.m., in a county hospital in Jining, Shandong Province, Zhuangzhuang (pseudonym) was born. He didn't cry or make trouble, he didn't eat, and he slept all day and night.
In the hospital bed, the strong mother also slept for a day and a night.
The child did not move until the due date, and after a week's delay, she had to get a oxytocin injection to give birth to Zhuangzhuang.
When she woke up and asked her husband about the child's condition, they were suspicious of the child's abnormality.
The obstetrician-gynecologist examined Zhuangzhuang and told them that the child's blood sugar value was too low and should be rushed to the intensive care unit.
The two of them groaned in their hearts, lest there be other problems with the child. The husband and wife took ZhuangZhuang to the city hospital without stopping, and did more elaborate physical examinations.
During their hospitalization at the city hospital, Zhuang Zhuang began to eat, and their hearts still did not let go. Strong and soft body soft lying down without strength, not easy to move. When feeding, you can't do the sucking action, you can only feed it into your mouth spoonful by spoon.
And the strong body is indeed not strong enough, his resistance is poor, a high fever, he was hospitalized for nearly twenty days.
The strong mother took the child in her arms, and she began to think back to her difficult pregnancy. She and her current lover are reorganizing the family, and the matter of having and raising children has been separated for a long time, and the two people are inevitably a little strange.
"Pregnancy is particularly bad."
The strong mother began to describe that during that time, the child's fetal movement was weak, and it was not as strong as her previous pregnancy. But the symptoms of morning sickness in pregnancy are very strong, even to the point of vomiting blood.
As a result, she was admitted to the hospital for recuperation, relying on nutritional needles every day to replenish the energy needed by her body, and she could not eat any food. For three months, drinking water was the only thing a strong mother would not vomit.
The pregnancy was a long and arduous one, and the strong mother thought that the child would be easier after birth. Who would have thought that suffering is the only beginning.
Hypotonia, weakness in the extremities, difficulty feeding, and weak crying are all symptoms of Chubby Willie's syndrome in the neonatal period.
At this time, the strength is only more than two months old.
After many misdiagnoses, the one-year-old baby was cast in a cast
Loving their son, strong parents are busy running. Doctors at a hospital in Shandong Province were unsure of the child's condition, suggested that they might have suffered from Chubby Willie syndrome, and suggested that they go to a larger hospital with more experience to check it out.
The strong parents took their children to a hospital in Beijing for genetic testing. The expert took the report sheet and told the strong parents that it was "muscle weakness".
In response to hypotonia, the treatment plan prescribed by experts is to take the child to rehabilitation training. The strong mother put her mind at ease, and it turned out that the child was not suffering from genetic diseases.
However, the disease of Little Fat Willie syndrome is not only rare, but also extremely easy to misdiagnose due to complex clinical symptoms. Doctors everywhere have different understandings of this condition, and the path to patients is full of difficulties and high costs.
"When I was six months old, my hips were dislocated." The stout mother said.
Every time she mentioned this experience, she clearly remembered the pain that Zhuang Zhuang endured. Strong and young, not suitable for surgery, had to wear orthosis for hip dislocation.
After two months, there was no change in the symptoms of stout. The strong parents took their children to Jishuitan Hospital in Beijing and registered for the department of orthopedics. The doctor told them that the child's two hips were dislocated and that they were going to have one operation.
The baby, who was less than one year old, was pushed into the operating room. The couple waited anxiously outside the door, praying again and again for strong and healthy growth.
At the beginning of 2020, The strong man who underwent an operation was cast in a cast and his body was heavy. Children of the same age are learning to walk, while the strong are sealed by the cast on their legs and feet.
In general, the strong should remove the cast after six months. The reason for the epidemic control, the inconvenience of going out, allowed Zhuangzhuang to remove the plaster after a whole year.
Missing the two-year-old toddler period, when going out, Zhuang Zhuang was always held in the arms of his parents. Rather than holding the weight of the child on the arm, the gaze of others makes their hearts sink.
"Why can't your child walk?" The eyes of others were full of puzzlement and doubt, and they stared at the child hiding in the arms of his parents, as if they wanted to see a satisfactory reason from him.
Passers-by who do not know the inside story easily label others as doting and despise others' qualifications as parents.
In March 2021, after removing the cast, Zhuangzhuang underwent cryptorchidism surgery. Surgery before the age of two is the best time, and cryptorchidism is just one of the symptoms of Chubby Willie's syndrome.
In April of the same year, Zhuangzhuang's disease was finally diagnosed, which was Little Fat Willie Syndrome. The report card was delivered to the family members, and the strong parents were hit hard.
Chubby Willie syndrome is still a problem that the medical community has no solution to, and patients have to live under supervision for life.
The strong father covered his heart and was pushed into the operating room. He originally had two cardiac stents in his heart, and now this heavy blow has allowed him to add two more heart stents.
It is hard to imagine that a person's heart can be stuffed with four heart stents.
The most visited place for this unfortunate family is the hospital. After repeated misdiagnosis and diagnosis, they have expected and disappointed, and these difficult days are bitter as tears.
The only wish is for the child to be healthy and alive
"The biggest difficulty is the economic problem."
In the face of the reporter's interview, the strong mother replied. This is a difficulty that no ordinary family can escape.
At the age of thirty-five, his strong father was taken to Beijing Xuanwu Hospital for a myocardial infarction and loaded with two cardiac stents. After being discharged from the hospital, the strong father could not overwork, and the elderly in the family urged them to hurry up and give birth.
The next year, the couple became pregnant and became strong.
So far, strong families have spent two or three hundred thousand yuan on medical expenses. The couple's savings are about to be hollowed out, which is their only source of livelihood.
Patients with Little Fat Willie syndrome, regardless of other aspects of the treatment cost, have to get two hormone injections every month, adding up to more than two thousand. Coupled with the fact that his strong father spent more than three thousand yuan a month on medicines, this family, which was not rich, was even more stressful.
To take care of two patients, one large and one small, the strong mother cannot go out to work. She always takes care of the strong at home, looks at the strong smile, and the pressure she endures can be eliminated a lot.
Although he can't exercise vigorously, he can understand his parents and respond to him. Only when it comes to eating, the strong will be more grumpy.
This is a manifestation of patients with Chubby Willie syndrome, long-term hunger, and excessive appetite that makes them unable to control themselves. Eating no amount of food can bring a feeling of fullness to patients, and their sharp weight increase can bring a series of obesity complications.
While controlling the amount of food kept strong, the strong mother couldn't help but worry. She only hopes to quickly develop a special drug to cure Chubby Willie's syndrome and bring hope to the patient's family.
At present, there are many families of patients with Little Fat Willie syndrome who need help, and related drugs have not yet been included in medical insurance. Many people who do not understand Chubby Willie syndrome spread gossip, which is a secondary harm to the patient's family. These external difficulties also affect the normal life of strong families, and everyone's tolerance for them is far from enough.
When it comes to the future, she doesn't have too many requirements for being strong. Instead of going to college and looking for a job like everyone else, the only wish is to "live in good health."
This is the most earnest sincerity of a mother.
Every family of a little chubby Willie syndrome patient, they are doing their best in the countercurrent, rushing to the future.