01
The 30-year-old porcelain doll girl has broken dozens of fractures and weighs less than 55 pounds in 8 months of pregnancy
Xiaozhe, who is only one meter tall, looks like a teenager at first glance, but her actual age is 30 years old. From the moment they were born, Xiao Zhe was diagnosed with a completely incurable disease - congenital osteogenesis imperfecta, which is a rare hereditary bone disease, because the bones are fragile, they are also often called porcelain dolls, glass people.
Xiao Zhe, who is so thin that he is almost skinny, has suffered dozens of fractures. And now, Xiao Zhe, who can no longer walk, will face the biggest challenge in his life and become a mother. Xiaozhe is eight months pregnant. Even after growing a full 10 pounds after pregnancy, her small body is still less than 55 pounds.
02
The porcelain doll pregnant woman is only 22 cm high, and the doctor predicts that it will be difficult to accommodate the growth of the baby
The length from the pubic bone to the tip of the uterus is the height of the uterus often mentioned in obstetrics, which directly determines the "greenhouse space" that the pregnant woman can provide for the fetus. Xiao Zhe's palace height is only 22 cm, and if a new life wants to survive, it must grow to at least 28 weeks in the "greenhouse", when the baby's need for palace height is far more than 22 cm.
There are many risks that hinder Xiao Zhe, who wants to be a mother, but she still decides to take a risk. Faced with Xiao Zhe, who held the highest level of fertility vouchers, the doctor decided to try carefully.
03
Life is inescapable, fractures, fragile shackles, unwilling to fate, and firmly moving towards self-reliance
In Xiao Zhe's memory, there was almost no candy in her blind box when she was a child, and she was seriously ill and unable to walk since she was a child. At the age of 15, he broke into the world of nail art, which was not popular at that time, and tried his best to accumulate light for his life in the boring nail shaping.
In the complicated selection of blind boxes, Sister Kun, a porcelain doll living in a "parallel world", seems to be luckier than Xiao Zhe who is hard to carry when she turns over the card of "treatment". Fifty years ago, in order for his daughter to live a way in the blank space of medical books, Sister Kun's father, who worked in general surgery, gritted his teeth and began to treat the first and only porcelain doll patient in his career.
The steel needle polished by her father became Sister Kun's "legs" to re-straighten her waist. But the moment he walked out of the house, the greenhouse that the father carefully cared for for his daughter still failed to withstand the wind and cold of the outside world after all. Sister Kun has asked for all her life, but she longs to stand in the sun and walk with her head up. And this seemingly easy request was also the peak that Xiao Zhe in childhood was most eager to touch. With the unwillingness to fate, they on the parallel line took a step towards self-reliance almost at the same time.
04
50% of the genetic probability is the heart of the porcelain doll fertility risk
In the trajectory of most people, starting a career and starting a family are often accompanied, and Xiao Zhe and Sister Kun, who have found themselves in the nail art world, are no exception.
For Xiao Zhe, who is only 22 cm tall, if he can hold on to 28 weeks, it will be considered a victory. But beyond everyone's imagination, Xiaozhe has persevered until the 33rd week. Breaking the conventional vertical growth, the baby grows in a rare horizontal position, creating a miracle of life for Xiaozhe. But even if the growth space is squeezed out for the baby, there is still a hurdle that every porcelain doll family cannot avoid, that is, the 50% genetic probability of the next generation.
Xiao Zhe's amniocentesis brought good news, the baby did not inherit the rare genes of porcelain dolls. But Sister Kun 20 years ago failed to usher in this lucky moment. Sister Kun, who once stood at the intersection of childbirth, lost the bet, and since then, she has closed this door for herself forever.
05
Premature birth anesthesia is in trouble, and doctors work hard to protect the lives of mothers and children
In this special cesarean section, Director Lu has to protect not only the fetus in the womb, but also the sternum, fragile bones, and narrow and deformed airways of Xiaozhe's scoliosis. The limitation of congenital osteogenesis imperfecta made it impossible for Xiaozhe to use conventional lumbar puncture, and the team of doctors tailored it for her was a cesarean section after general anesthesia.
Intelligence gathered by the fiberoptic scope revealed that Xiao Zhe's epiglottis was elongated and narrow, like a strong curtain, firmly covering the glottis that should have been intubated. Even if the fiberoptic scope can find a way to bypass the epiglottis, the angled glottis is still impossible. The doctor was forced to choose an alternative and use a laryngeal mask to assist breathing, but the oxygen supply of the laryngeal mask was very limited, and it was likely that it would not be able to support the breathing that Xiaozhe needed "while sleeping".
At this moment, there was no second way in front of them, and at the moment when the anesthetic drug entered the vein, Director Lu and Director Chen gritted their teeth and embarked on a battle against the water, and the countdown to this battle was five minutes.
06
The parallel world has different choices, and there is no regret in the fall, but it is endless
On the second day after the operation, Xiao Zhe, whose vital signs were stable, was transferred back to the general ward, not caring about the pain of her wounds, all she was thinking about was the baby who was still in the neonatal intensive care unit. Although he has not recovered yet, Xiao Zhe is working hard to provide breast milk to the baby every day, just so that this little guy who has not seen him above can be healthy.
Accompanying Xiao Zhe through the road of life and death, we have witnessed the fragility and tenacity of life several times in her story. With a body far more fragile than ordinary people, Xiao Zhe set himself an almost impossible task. And at this moment, looking at the baby's sleeping little face, Xiao Zhe's reason for "not hitting the south wall and not looking back" has found the answer in the smile raised at the corner of her mouth.
In the parallel world, although Sister Kun did not choose to have children, she also has family and friends who are always there by her side.
"The Edge of Life" small popular science:
1. Osteogenesis imperfecta (also known as "porcelain dolls") is an inherited bone disease caused by a genetic mutation. The main symptom of the disease is weak bones, but other parts of the body are also affected. Throughout China, more than 100,000 people came into the world with fragile bones.
2. For porcelain doll patients who are willing to have children, obstetricians recommend that before preparing for pregnancy, consult and test genes in advance, and then choose natural conception or three generations of test tube according to the high or low genetic probability analyzed by the doctor, so as to prepare for the arrival of a healthy baby.