SHANGHAI — When Tang Xiaohua found out she was pregnant with twins, she was ecstatic. The 35-year-old felt she had received a gift from the gods after previously suffering two miscarriages.

But Tang’s joy was short-lived. Fifteen weeks later, she was diagnosed with twin-to-twin transfusion syndrome (TTTS), a rare condition that occurs at random in around 15-30% of identical twin pregnancies. Left untreated, the fetuses’ chance of survival is close to zero. And accessing treatment in China is far from easy.

In Qingyang, Tang’s hometown in northwest China’s Gansu province, none of the local obstetricians were trained to handle such a complex condition. Tang traveled over 250 kilometers to Xi’an to consult more experienced specialists, but it was little better there.

In Xi’an, a dozen doctors filed in and out to examine Tang’s ultrasound as she lay on the bed. Finally, Tang learned it was possible to save the twins through fetoscopic laser surgery, a procedure that would correct the irregular flow of blood between the two fetuses.

In effect, too much blood was flowing from one fetus to the other. If it went untreated, the twin starved of blood was likely to suffer organ failure, while the other might develop heart complications. But a successful surgery would give at least one twin a 90% chance of survival.

Yet none of the doctors present were capable of performing this delicate operation. Instead, they suggested that Tang undergo an abortion. Her heart sank as she realized she was probably going to lose her unborn children once again.

“I didn’t know how to bear the feeling of them moving,” says Tang, who spoke with Sixth Tone using a pseudonym for privacy reasons. “With the doctors’ words repeating in my head, I couldn’t help but cry out in the hospital; I felt like it was a dead end for these little lives.”

Having twins is widely considered a joyous, miraculous event in China. Celebrities’ twin pregnancies often make headlines, and many popular TV dramas and movies feature twin characters. Twins are even more enviable due to decades of strict family planning restrictions via the one-child policy.

Today, Chinese women are more likely to give birth to twins than ever. Multiple pregnancies have surged since the development of assisted reproductive technologies, with some clinics promoting their ability to help couples receive “double happiness and blessings.” Twinning rates have also risen due to delayed childbirth, which increases the likelihood of multiple pregnancies because of higher levels of certain hormones.

But multiple pregnancies can also bring serious health risks. There is a higher chance that the babies will be born prematurely, which can cause long-term health effects. Mothers carrying twins, meanwhile, experience a higher rate of gestational diabetes, high blood pressure, and even death.

Yet few in China understand these dangers. In a survey of around 3,800 people conducted by the Shanghai First Maternity and Infant Hospital in 2015, 90% of respondents said having twins was extremely serendipitous but had no awareness of the risks: Three-quarters believed that the risks were no different than a single pregnancy. Only 3% had heard of more severe complications such as TTTS.

And when rare diseases do occur, families in most parts of China still struggle to access the highly specialized care needed to save the fetuses. Many, like Tang, are advised to undergo an abortion in the hope that the next pregnancy is healthy.

Maternal-fetal medicine, or perinatology, began to emerge worldwide in the 1980s. It wasn’t until 2010 that it was officially recognized as a branch of obstetrics in China, finding an advocate in the Shanghai First Maternity and Infant Hospital.

In that same year, the hospital established the county’s first fetal medicine department, focusing on managing the health concerns of mothers and fetuses before, during, and in the weeks following pregnancy. Ever since, their patient list has mostly comprised multiple pregnancies from across China.

“With the advances in fetal medicine, TTTS doesn’t mean babies should be handed a death sentence any more,” Sun Luming, the head of the hospital’s fetal medicine department, tells Sixth Tone. “Fetuses should also be seen as patients; they are just sick babies living in the mother’s womb, needing treatment.”

Prior to the founding of the Shanghai clinic, mothers had to travel to Hong Kong to access treatment for TTTS and other multiple pregnancy complications. Even today, only top hospitals in Shanghai, Beijing, and a few provincial capitals have established fetal medicine departments.

It was Sun’s department that offered Tang hope of saving her unborn children. Over the past decade, the center has become well-known for its expertise in fetal therapy, having performed over 300 endoscopic laser ablations for TTTS patients as well as hundreds of other procedures.

When Tang traveled to Shanghai, Sun reassured her that her situation had not deteriorated to the point of requiring ablation surgery. She suggested a more conservative therapy to remove surplus amniotic fluid.

“At first, two liters of fluid were removed from my uterus. But later, the situation worsened again and I had to undergo a second therapy to remove another 1.5 liters,” Tang recalls.

But the treatment paid off. Nine weeks later, Tang gave birth to two daughters. She named them Tang Guo and Tang Dou, or Candy and Sweet Bean, in the hope that they would never again face bitterness in their lives.

Many other women, however, cannot access this level of care. Despite growing interest in the field, Sun has found it challenging to train more experienced fetal medicine experts in China.

“Fetal medicine doctors must be generalists. In addition to obstetric knowledge, they must master genetics, have rich clinical skills, accept formal training in ultrasound, and be able to do fine intrauterine surgery,” Sun says.

Chinese health experts, meanwhile, say more needs to be done to discourage women from trying to conceive twins. In recent years, the irresponsible use of assisted reproductive technologies has led to a surge in multiple pregnancies.

China’s first test-tube baby was born in 1988, and approximately 300,000 test-tube babies are now born every year. In 2003, China’s health ministry amended its ART guidelines in an attempt to ensure such therapies were used ethically. Twin pregnancies were discouraged and triplets strictly prohibited. Couples seeking therapies such as in-vitro fertilization were required to first sign a consent form agreeing to fetus reduction surgery — a procedure aborting one or several fetuses — in the event that they became pregnant with three or more children.

However, the rate of multiple pregnancies rose in China between 2007 and 2020, despite infertility rates in the country also soaring from 12% to 18%. In Chinese reproductive medicine centers, average multiple pregnancy rates exceeded 30% in 2016 and were as high as 40% in some cases, according to official figures.

Among China’s general population, abuse of fertility drugs has led to extreme multiple pregnancies. Last year, an 18-year-old in central China’s Henan province was reported to be pregnant with octuplets. While doctors warned that the mother must undergo fetus reduction surgery, to which she eventually agreed, she still intended to keep four or five of the babies. In 2015, a 25-year-old became pregnant with nine fetuses.

Huang Hefeng, an academician at the Chinese Academy of Sciences and an expert in reproductive medicine, tells Sixth Tone that China discourages the use of fertility medications to achieve multiple births, as in many other countries.

In addition, Huang considers the advertising of multiple births such as “dragon-phoenix twins” (a son and a daughter) as “good” news by some small medical institutions as “totally inappropriate.”

Previously, when the pregnancy rate from IVF and embryo transfer (IVF-ET) was relatively low, doctors would often transplant two or even three embryos to improve the likelihood of fertilization, Huang says. However, as the technology has matured, the practice has moved toward single embryo transfers so as to reduce perinatal risks and the chance of embryonic originated adult diseases in the offspring.

But health experts are still appealing to the authorities to strengthen its ART guidelines, which have not been updated in almost two decades. In 2018, the Chinese Medical Association initiated a consensus to reduce the number of embryos that can be transplanted at one time — the most effective measure in reducing multiple pregnancies.

“On the basis of not affecting implantation and cumulative pregnancy rates, we hope to reduce China’s IVF and embryo transfer-assisted multiple pregnancy rates to less than 20% as soon as possible,” stated the proposal.

Multiple pregnancy rates have decreased in the years since the consensus was launched. According to Huang, IVF-related twinning rates fell to 22.4% in 2020.

“If the mother happens to have triplets, the hospital has a responsibility to perform fetal reduction surgery,” Huang says. “For a medical institution, having a single, full-term, and healthy baby is the gold standard,” she added.

Fetal reduction treatments such as potassium chloride injections or radiofrequency ablation are some of the most frequent procedures administered in fetal medicine departments. However, for mothers who finally become pregnant, undergoing such treatment remains heartbreaking, even if it’s in their best interest.

One such case was Shan Xinran, who also spoke with Sixth Tone using a pseudonym for privacy reasons. In 2019, after being married for four years and failing to conceive naturally, Shan and her husband decided to seek medical assistance to have a child. By the age of 39, she had undergone three failed transplants of two embryos each time, finally becoming pregnant on the fourth try, with both embryos transferring successfully.

But shocking news soon followed: one of the embryos had split into two identical twins, raising the risk of TTTS. Shan knew that surgery was mandatory and that if she insisted on keeping all three fetuses, she might lose them all. Still, she wanted to at least keep two.

Radiofrequency ablation surgery was arranged 16 weeks into her pregnancy. Before the surgery, Shan asked whether she could have a photo of the triplets but was denied. “They comforted me by telling me that I had made the right decision and that it would be better if I could move on,” Shan says.

The doctor planned to reduce one of the identical twins, but another of the baby’s heartbeats also stopped on the second day after the surgery. Going from having triplets to a single fetus, Shan burst into tears.

“Even though I knew the dangers of the surgery in advance, I still felt a great deal of sadness,” Shan explains. “For the doctors, it was a successful surgery, but for me, it was a tragedy.”

Shan was discharged from the hospital on Mother’s Day. The medical staff organized a surprise event in the obstetrical ward to celebrate the new mothers. Shan felt her heart had been torn into two pieces, and wept quietly.

“I could have been a mother of triplets, but I gave up this great chance. I’m such a horrible mother. I have said sorry to my babies again and again. If they can hear me from heaven, please, please come back to me.”

Editors: Tom Arnstein and Dominic Morgan.

(Header image: A woman pregnant with twins poses for a photo in Beijing, 2013. Mai Tian/VCG)