The big man from Shandong came to Beijing, squatting at the corner of the children’s hospital corridor, wiping tears, shaking his shoulders, desperate and helpless.
It’s a common sight in hospitals, especially in children’s hospitals, where expecting parents get a split-second emotional breakdown when they learn that their child has no hope of treatment.
Yue Nan from Beijing, who was taking his son to see a doctor in the hospital, saw himself in this crying father.
(Night emergency at a pediatric hospital in Beijing)
On June 25, 2015, 14-day-old son Nemo was diagnosed with “massive intracranial hemorrhage, severe hemophilia A“. Within two hours, Yue Nan signed three critical illness notices. At that time, his son’s brain tissue had been seriously damaged and was in a liquid state. At the most critical time, his son had dilated…
He didn’t tell his lover who was confinement at home the truth, worried that she wouldn’t be able to bear it, but only said that his son’s cranial pressure was abnormal, and he wanted to carry it himself first.
When his son was sent to the ICU, Yue Nan sat alone outside the door. The great sadness hit him. He couldn’t bear it anymore. , helpless to the extreme. The medical staff and family members who come and go in the hospital may be used to this, and no one will take the initiative to comfort him. It was not until the family members and colleagues arrived in the afternoon that Yue Nan had the strength to support.
Now my colleagues still clearly remember Yue Nan who was outside the ICU at that time, but there are few words to describe his grief, and he can only say, “We can’t take it anymore when we see him, we really can’t hold it anymore. “. In the past, Yue Nan was optimistic and lively, and liked to tease with colleagues when he had nothing to do.
When he was in college, Yue Nan longed for a life where he would play with his children and accompany them to grow up, such as painting together, going to the park together, and meeting other people’s babies. Can’t stop looking.
(a postcard that Yue Nan likes very much, he said that he yearns for the life in the picture )
The 34-year-old Yue Nan works for a well-known Internet company. When he hugs his five-year-old son, he still smiles, although now his son still can’t speak, speak to the outside world There was not much reaction, and he couldn’t stand, but this was his son after all, and holding his son had a heavy responsibility and a sense of steadfastness.
It is said that when you are in your thirties, Yue Nan, who is getting older, is sometimes confused, why is his life in his thirties so heavy?
Yue Nan originally wanted a daughter, wearing a beautiful little skirt, tied with a bow, and always sticking to her father. It was an irresistible happiness. This vision made him get married at the age of 26. In his circle of friends, he is considered an “early marriage”.
At the age of 28, my wife finally became pregnant. Yue Nan couldn’t wait to find colleagues with children for advice on how to take care of pregnant women and children. At that time, he would observe the changes in his wife’s belly every day, listen to fetal movements, and play music for the baby in his womb.
In addition to learning about pregnancy and childbirth, stocking up on mother and baby supplies is also essential. I went to Japan with my colleagues to build a team building, and everyone else went to the scenic spots to play. Yuenan went to department stores and supermarkets to scan the goods, and compared the characteristics of different brands of baby products, such as water cups, diapers, small spoons, bibs, etc. I bought a lot of packages to bring back to China, and I bought a year’s supply for my child just for diapers.
(The clothes Yuenan prepared for the child at that time)
Because the wife is about to give birth soon, considering that she will always have to hold the child in the future, and it is inconvenient to take out her mobile phone, Yue Nan also bought a watch for his wife, so that she can watch it as soon as she lifts her arm. time.
Filled with the happiness of being a father soon, Yue Nan often sends photos of hoarded baby products to the circle of friends, sometimes it is a bed full of baby clothes, sometimes it is a pile of jars Filling milk powder, even his colleagues were infected by his happiness, saying that Yuenan would definitely be a “child slave” in the future.
It was one day past the due date, and the child had not moved yet. The hospital started to give birth. The wife once proposed to have a cesarean section, but the hospital insisted on giving birth to her because of the “natural birth rate”.
My wife’s cervix was opened ten fingers, but she still couldn’t give birth. Yue Nan remembered that the situation was very dangerous at the time. He signed a total of twice outside the delivery room. After the forceps, the son was “dragged out”.
Yue Nan, who was restless outside the delivery room, even planned for the worst. In the event of an emergency, he would definitely protect the adults.
“In the past few years, I sometimes wondered if this was an accident, whether my son’s cerebral hemorrhage had anything to do with the forceps? Or an early dissection, the son was born smoothly, the brain is not squeezed, and intracranial hemorrhage can be avoided in the future. “Yue Nan couldn’t let it go.
At 10:45 pm on June 10, 2015, my son Nemo was finally born, weighing 8 pounds and 4 taels. In medicine, neonates with a weight of 8 catties or more are macrosomia, which is related to excessive intake of nutrients by pregnant women or genetic and environmental factors.
When he was just born, the nurse took his son out and gave Yue Nan a look. “Nimo’s little eyes haven’t been fully opened yet, and he feels more like a mother.” The child was then admitted to the neonatal intensive care unit and slept in an incubator.
At that time, the child had no abnormality, his legs and arms were strong, and he took off the bracelet on his wrist twice on the second day of birth.
Three days later, Yue Nan took his wife and children home from the hospital. June 14th is my father’s 60th birthday. Relatives and friends gathered to celebrate. The family was very lively, and it was a double happiness.
On the seventh day of birth, Yue Nan found that Nemo could crawl twice and kick his legs when he was full. In those days, he was surrounded by happiness all the time. Every day when he went to work, his wife would send pictures of the baby, either cute or naive, so cute. As soon as Yue Nan saw his son’s photo, the corners of his mouth would rise unconsciously.
(Nemo as a kid)
The child is taken care of by his family and confinement nanny. Yue Nan starts to deal with the backlog of work. When he comes home at night, his son is usually already asleep. On weekends, he would play with his son all day and give him a bath.
Beautiful days are like a dream, Yue Nan’s happiness only lasted 14 days.
After work on June 24, Yue Nan rushed to the hotel where the wedding was held, intending to show the children the venue for the Hundred Days Banquet. When he arrived at the hotel at 9 pm, he suddenly received a call, and his wife said in a crying voice: “Come back quickly, the child vomited!”
Yue Nan, who hurried home, found that his son kept crying, but it was completely different from usual. He blushed several times but couldn’t cry, and the confinement sister-in-law also Never encountered such a situation, at a loss.
When I went to a pediatric hospital in Beijing, I went to the emergency department, and then I checked the blood test and B-ultrasound. The emergency doctor didn’t see anything unusual, no infection was found, and there was no problem with the digestive system, just There is a little anemia, but anemia is not the cause of vomiting, so the doctor recommends going home for observation first.
(Night Pediatric Emergency)
When I got home, the baby fell asleep and started crying again, and the milk he drank spat out in a jet. Yue Nan immediately took his son to the hospital where he was born. The doctor found that the child’s muscle tone was unusually high, which was suspected to be caused by increased intracranial pressure. Because the hospital did not have a pediatric department, he was eventually transferred back to the original hospital.
The next day, Nemo entered the ICU through the green channel, and Yue Nan’s life was completely changed.
In the next two hours, Yue Nan signed three critical illness notices. The doctor said that the child was in a dying state due to massive intracranial hemorrhage, and he had severe hemophilia A. “The child’s brain tissue has been severely damaged and is in a liquid state, which means that the brain has become a bean curd brain.”
(Nemo’s test results at the time)
My colleagues helped to contact Beijing Children’s Hospital, and a director of neurosurgery made a special trip for consultation. She told Yue Nan, “You can transfer the child to another hospital to prepare for surgery, but even if he does, he won’t be a good boy anymore. You can decide for yourself.”
Yuenan still wants to try it.
The situation was critical. The transfer time was at the rush hour of traffic at 5 or 6 o’clock in the afternoon. Colleagues helped to contact the traffic police and Beijing Traffic Radio, and provided guidance and support along the way. The ambulance was in the emergency lane. Speeding, the broadcast announced that an ambulance carrying a seriously ill child was heading to the Children’s Hospital, asking passing drivers to give way to their lives.
In the ambulance, the unconscious son was wearing an oxygen mask, and the colorful Chang’an Avenue outside the car window was blurred into a grayish white in Yue Nan’s eyes. It only took 15 minutes on the road, but that was probably the longest 15 minutes in Yue Nan’s life.
In the NICU (Neonatal Intensive Care Unit) of the Children’s Hospital, Yue Nan saw his wife slumped on a chair in the corridor. The doctor bluntly said that the operation is of little significance, and suggested that the treatment should be abandoned.
Yue Nan and his wife were sobbing so hard that it was especially cruel and difficult for them to say “give up”, but they had to reluctantly agree.
Maybe this is the last look. Yue Nan and his wife saw their son with a tube inserted and slumped on the ground with suppressed crying. Relatives took them out of the ward…
In just half a month, their happiness was completely shattered by this sudden disease, and their lives fell to the bottom.
Allow your child to walk with dignity, even if you give up treatment.
After four days in the Children’s Hospital, Yue Nan sent his son to the United Family Rehabilitation Hospital.
Nemo is only relying on infusion to maintain his life, and the intracranial hemostatic medicine has also stopped. Every day his family will stuff a feeding bottle into his mouth, or use a cotton swab dipped in water to wipe his mouth. A swipe, but he didn’t know how to swallow.
On the 7th day, my son actually drank a few mouthfuls of milk. Even the doctor thought it was incredible and said it was a miracle. Later, the doctor analyzed that the child’s skull has not been closed. As the intracranial hemorrhage was absorbed, the intracranial pressure also dropped, and the child gradually regained some consciousness, but the damage caused to the brain was irreversible.
“Since I can drink milk, let’s go home!” Starting from July 4th, the amount of milk my son drinks from 20ml, 40ml and then 60ml more and more, the swelling of the head subsided and the body became round.
Three months passed quickly. Yue Nan took his son to a follow-up consultation. The doctor said that the child’s brain development had stopped, and it was unknown how long his life would last.
(Nemo’s 5th birthday cake)
“Is my son no longer able to call us Mom and Dad?” His wife suddenly sobbed, Yue Nan also cried, and he couldn’t answer the question.
Time flies like this. Although Nemo’s brain is no longer developing, his body is still growing, and the sides of his head are collapsed, somewhat like a date pit. When he was one year old, he could still stand with his hands on the back of the sofa, but when he was four years old, he couldn’t sit still and could not support his body.
(Nemo is doing EEG)
Children cannot chew, sometimes choke on eating, and their eyes are drawn to light and shaking, but their eyes are empty.
“Sometimes when I scratch his armpit, he will laugh.” Yue Nan said that he could feel that his son would prefer to be with his parents, and they would put the child before going to work in the morning I took it to my parents’ house, and when I picked it up at night, I was obviously happier than when I sent it off in the morning.
According to medical information, Yuenan’s son suffers from hemophilia type A, which is coagulation factor VIII deficiency, also known as AGH deficiency. It is a sex-linked recessive genetic disease. Female Transmission, male onset.
Hemophilia patients are commonly known as “glass dolls” and should not be bumped, otherwise it is easy to cause subcutaneous or joint bleeding.
Before the age of three, Yue Nan had to take his son to the hospital several times a month for “eight coagulation factors”. The nurses already knew them and took care of the family every time. It’s just that the child’s blood vessels are not easy to find, and it takes at most seven needles at a time to succeed.
(Nimo was in the hospital for “Factor Eight”)
In the past few years, the child’s condition has gradually stabilized, but there are still two intracranial hemorrhages and one gastrointestinal hemorrhage.
“To treat gastrointestinal bleeding, you must first go to the gastroenterology department for a gastroscope, but the gastroenterology department is afraid to do it for fear of danger.
Until now, endoscopy has not been done.
The hospital does not have a green channel for hemophilia patients. The hematology department asks the emergency department to go directly to the infusion, but the emergency department has to go through the process. In order to lose, Yue Nan was exhausted physically and mentally by tossing in such a medical environment with serious asymmetric medical orders.
(Yuenan accompanies Nemo in the hospital for infusion)
Yue Nan learned that the treatment and social security of hemophilia in China are relatively backward in all aspects. In some countries, people with hemophilia wear a small green sign on their chest to inform people of their condition. In the hospital, patients with hemophilia also have special access to see a doctor, which can timely transfuse blood clotting factors to stop bleeding, but all this is blank in China.
Nimo, who is more than 5 years old, has grown to 42 pounds. The recent CT results show that the position near the skull is only a thin circle of brain tissue, and the brain cannot develop any more. During the day, the children can only rely on the elderly to take care of them, but the parents are not in good health. The father has a heart attack, and the father-in-law has a cerebral infarction. Like many only children, Yue Nan has no other than to carry the weight and move forward. Law.
Nimo seldom cried. Even when he was in the hospital, he was only agitated. He hardly shed any tears. He laughed from time to time. Maybe he was thinking about something happy? Yue Nan sometimes thinks, at least , he does not need to experience the bitterness of the world.
(Yuenan family in the park)
But when the children in the community saw the son in the trolley, Tong Yan Wuji said, “Mom, look at how stupid this child is”, Yue Nan was still deeply hurt, and he was furious , and even wanted to “pump that child”, but in the end, reason calmed him down, he thought that if he couldn’t hold it, he would not be a man, so he gritted his teeth and stood up.
In her spare time, Yuenan would go to the temple to pay homage, or just sit there, where there is rare peace. The son’s illness was a huge rock in his heart, heavy and irreversible.
What about the future? This is his biggest worry. After decades of age, who can take care of his son who is unable to live? Is it a community, a non-profit organization, a volunteer, or a caring hospital? For now, the outlook is unclear.
(Yuenan and Nemo)
There are also very rare times, he thought, if the emergency situation at that time happened again, and he was not saved, would it be a relief for the child?
“I have always had a wish, hoping to find children and families with the same illness and physiological state as my children, so that everyone can come together to find a way to share Nursing experience, encourage and support each other. Even if it’s just to comfort each other, hug each other to keep warm.” Yue Nan said.
(Yue Nan is holding Nemo at the beach)
He and his lover are so lonely, they need someone to build a fire in their hearts with them to get through another cold winter.
*The content of this article is for the popularization of health knowledge and cannot be used as a specific diagnosis and treatment suggestion, nor can it replace the face-to-face consultation of a licensed physician, and is for reference only.
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