After 143 days in a Shenzhen hospital he survived, but his mother faces ongoing hurdles
The baby was incredibly tiny, just a tad larger than the palm of an adult's hand. His thigh was almost as thin as a chopstick and his mouth looked like a little soybean.
Born five months premature and weighing less than 450 grams, the newborn was as light as a bottle of mineral water.
His skin was translucent and his eyelids were still fused shut. His organs were not fully developed and he relied on tubes inserted into his mouth and stomach to stay alive.
The nurses at Shenzhen Maternity & Child Healthcare Hospital in Guangdong province performed their duties with the utmost caution to avoid harming his fragile body. They nicknamed the baby Rourou, meaning chubby and adorable, and hoped for the infant's survival.
Born at 21 weeks and four days, about half of a 40-week pregnancy, the baby is the youngest child saved in China, and only three days older than the record for such a birth.
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Beating a theoretical survival rate of zero, the baby was discharged from the hospital in March and celebrated his first birthday in October.
Premature birth is the leading cause of neonatal death, resulting in the loss of 900,000 babies across the world in 2019.Globally, one in 10 babies is born prematurely. For those born at 23 weeks, their theoretical survival rate is only about 40 percent, and one in four is severely disabled.
Brain hemorrhages, intestinal necrosis, respiratory distress, and retinopathy are among the complications that can lead to death or lifelong problems.
Each year, in neighboring Hong Kong there are about 4,000 premature births, including 120 babies born before 28 weeks. In recent years, the survival rate of 23-week premature babies in the city has risen to 50 percent.
The Shenzhen Maternity & Child Healthcare Hospital has saved over half of the nearly 200 infants born under 28 weeks each year, and consistently sets records for the survival rate of extremely premature babies.
Despite the medical breakthroughs, families with surviving premature babies still face challenges including ongoing health risks and caregiving, as well as trying to ensure their child keeps up with his or her peers.
Beating the odds
With a short cervical canal and intrauterine infection, Huang Wei delivered Rourou in October last year, about five months earlier than the due date.
Babies born extremely prematurely have nearly no chance of surviving. Almost everyone advised Huang to give up on the pregnancy.
But she was determined to have her first baby, even if it posed a risk to her own life. After six years of marriage, Rourou was conceived with the help of in vitro fertilization.
The baby was born at night, and the doctors and nurses involved in the delivery were determined to save Rourou. They worked quickly to ensure the newborn's resuscitation and provided respiratory, circulatory, and nutritional support in the "golden" first hour after the birth.
Never having treated a baby born so prematurely, the medical team had to explore the most suitable care methods based on past experiences. They kept the incubator's environment as similar to a human womb as far as they possibly could. The brain tissue of a premature baby is as soft as tofu. So, to avoid a hemorrhage, two to three nurses were involved in moving Rourou's fragile little body.
Huang was separated from the baby and not allowed to visit the neonatal ward. The new mother had to rely on video calls and photos to see her son.
She did not return to her home in Jieyang, Guangdong, but rented a room near the hospital. Huang expressed milk every day and sent it to the hospital, where the nurses fed it to Rourou.
After 143 days in the hospital, his weight increased from 450 g to 4 kilograms, even heavier than some full-term babies. During his recovery, he overcame a serious infection and underwent eye surgery. With all his tubes removed and suffering no brain hemorrhage, the baby was discharged from the hospital safe and sound.
Huang spent about 380,000 yuan ($52,000) to save her son, with 60 percent reimbursed by national health insurance.
Due to financial pressure, she returned to Jieyang to raise the baby and goes to Shenzhen every month for checkups.
Yet the burden of childcare has been compounded. She is seeking a divorce from her husband, who she said has a significant gambling debt.
Huang quit her job to prepare for pregnancy and has taken to social media for financial help. She has shared Rourou's videos online and generated income from selling maternity and baby products.
At the baby's one-year zhuazhou, a ceremony where a child randomly picks an item to predict their future, Rourou grabbed a writing brush representing future good wishes.
This auspicious choice filled Huang with hope that her child will grow into a knowledgeable person capable of making meaningful contributions to society.
Ongoing challenges
After premature babies return home the test for the family begins in earnest.
Jennifer Lam's son Lucas weighed 775 g when he was born at 26 weeks in 2012. The early birth impacted the functions of many of his organs, such as his brain, lungs and eyes, as well as his muscles.
He is prone to pneumonia, so Lam keeps her house clean and at a constant temperature and humidity. After three months of intubation in the hospital, Lucas tends to vomit easily. He can only consume small meals, but eats more frequently than other children.
Lam devotes almost all of her free time to taking care of her son. By the age of eight, Lucas lagged behind his peers in many development aspects, such as speech, walking, and especially social interactions. Now aged 12, he is relatively small compared to his peers, one of the more obvious development indicators of children born prematurely.
Lam has taken Lucas to swimming classes and social interaction lessons to improve his weakness. She has also helped him explore his strengths, such as literature, computer programming, and music, in the hope these skills can help him later in life.
Lam, who is also the vice chairperson of Preemie Parents Support Group (Hong Kong), has heard many heartbreaking stories from families with preterm children. They include cases of dwarfism, serious myopia, being wheelchair bound from an early age, and even cerebral palsy.
Although many preterm children eventually integrate well into society, a new study shows that they are less likely to gain a higher education or secure a high-paying job.
A scientific research article published by plos.org in November, analyzed data of 2.4 million babies born between 1990 and 1996 in Canada.
It suggested long-term support, including providing psychological, educational and vocational resources that go beyond clinical care to help mitigate the long-term effects of premature birth.
Improving prospects
Three years ago, Queen Mary Hospital in Hong Kong established a cross-discipline medical team to provide comprehensive support for families with babies delivered at 23 to 25 weeks.
In August, the team said it had assisted over 20 parents. The assistance included helping them delay the delivery date, monitoring the overall situation, deciding emergency plans, and in some cases helping parents recover from the sorrow of losing a baby.
Before Rourou's delivery, Shenzhen Maternity& Child Healthcare Hospital had saved five babies born at around 22 weeks over a three-year period.
Despite medical advances, the risk of premature births is on the rise due to an increase in the maternal age and the use of assisted reproductive technologies.
The ultimate goal is not to set records on the age of saving premature babies, but to try and ensure they have healthy development, experts said.
Zong Haifeng, deputy director of Shenzhen Maternity& Child Healthcare Hospital, called for special financial support for families with premature babies, such as single-parent ones, that face money difficulties. He also hopes more professional and affordable care services for premature babies can be provided, and parents have more channels to seek help and ease their mental stress.
Many young couples are just starting out in life and have small savings. But the birth of a premature baby brings big challenges, which are prolonged, demanding, and costly, Zou pointed out.
In serious cases, the hospital costs can exceed 1 million yuan, and there are also follow-up examinations, and training and childcare expenses. In some complex situations, even two or three carers may not be able to manage at home.
Lam Hung-san, professor at the Chinese University of Hong Kong's pediatrics department, urged the Hong Kong Special Administrative Region government to strengthen follow-up assessment of all premature babies so doctors can better monitor their development. He also called for reducing the waiting time for rehabilitation treatment. Sometimes it can last for six months to a year, which denies the children the best time for treatment.
Given the pressure of caring for premature babies, it's often usual for one parent to quit their job. He suggested that the government consider recurring support measures such as tax rebates.
Lam also called for more guidelines and assistance for children born prematurely to have a suitable education to lay a good foundation for their future employment.
Without support, young parents and their children may be overwhelmed by their difficult circumstances, which could deter other young people wanting children, he cautioned.
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Jennifer Lam, from the parents support group, called for greater attention to be paid to parents' mental health.
Unprepared for the early arrival of their babies, young parents are often haunted by fear of receiving bad news and the pain of being unable to provide adequate support.
They can find themselves overwhelmed by anxiety about their child's development, and left feeling guilty about their child's slow learning.
Lam said for her, the encouragement given by other parents of premature babies is even more valuable than that of family and friends. She urged more parents of these children to join activities organized by related associations, which could ease stress and improve mutual support.
While some children struggle to keep pace with their peers, some others born prematurely, including Isaac Newton and Albert Einstein, have been recognized for their genius and contributions to science. Lam hopes that society does not put a label on premature babies or set limits for them.
As Rourou's mother Huang Wei emphasized, "no foot is too small to leave a footprint", Lam believes these little feet will eventually carve out their own paths.
