For the first two trimesters of her pregnancy in 2018, Kristen Miller, a high school social studies teacher from Cleveland, had an unremarkable pregnancy—“textbook perfect,” she claimed. However, she was told she had excess amniotic fluid at her 32-week prenatal visit, a condition that can slightly raise the risk of difficulties.
She went to work the next day but noticed the fetus wasn’t moving much. She went to the hospital since she felt something wasn’t right. A heartbeat could not be found by the attending physician. Miller was told that her daughter, Leighton, who she had named, would be stillborn.
After the delivery, the physicians discovered that Leighton’s umbilical cord had two knots in it. Miller was told by the researchers that the knots were the cause of the stillbirth, which is defined as a fetus dying in the womb at or after 20 weeks. “Everyone said, ‘This is it, don’t look any further,’” Miller explains. “However, I got obsessed with discovering why.”
According to the Stillbirth Collaborative Research Network, which is supported by the National Institute of Child Health and Human Development, over half of the 26,000 stillbirths in the United States each year have an unknown cause. According to research in the medical literature, umbilical cord abnormalities—of which there are around seven kinds, ranging from cord cysts to entanglements to knots—may account for anywhere from 10% to more than 25% of stillbirths. However, medical professionals disagree about which types of cord anomalies are directly linked to stillbirth, and whether or not those abnormalities may be detected and stillbirths avoided. The standard of care—how a patient should be treated by professional guidelines—for patients like Miller is unlikely to alter without a firmer agreement.
Miller’s hunt for answers led her to a support group, where one researcher’s name kept coming up: Jason Collins, a retired obstetrician-gynaecologist who now works as an independent medical researcher. Collins, who worked in Louisiana for three decades, believes that these kinds of mishaps cause a higher number of stillbirths than the research implies and that many of them could be avoided with additional screening that isn’t part of the existing standard of care. “This is a topic that is rarely discussed,” Collins explains. “It’s as if there’s no awareness. It’s slipping between the cracks.” Some experts and doctors agree, stating that the medical community should provide more knowledge on the subject. However, many others are sceptical, citing a lack of comprehensive and consistent research and cautioning against over-screening of pregnant women.
According to Christopher Zahn, vice president of practice activities at the American College of Obstetricians and Gynecologists (ACOG), determining the link between umbilical cord anomalies and stillbirth is difficult because many are also seen in live deliveries. “It’s not an all-or-nothing situation,” he continues, “so establishing actual cause and effect is a difficulty for which we lack evidence.”
The umbilical cord is the fetus’ lifeblood, providing oxygen and nutrition while also removing waste. All pregnant animals that give birth to live offspring have one; the oldest known example is a 380 million-year-old prehistoric fish fossil discovered by Australian researchers in 2008 with a calcified umbilical chord. The chord is considered a good luck charm in many cultures, and it is sometimes eaten as a cure for infertility. The umbilical cord’s failure signifies the end of life.
Despite the importance of the umbilical chord in fetal development, much of its complexity remains unknown. This is especially true when it comes to its diseases. According to Alfred Abuhamad, an obstetrics and gynaecology professor at Eastern Virginia Medical School, “cord accidents have not gotten the attention they deserve as a potential factor to poor pregnancy outcomes.” Abuhamad recalls a patient who came to him 20 years ago after a stillbirth caused by a knot in the umbilical chord. Using ultrasound, he was able to diagnose the same sort of knot in the patient’s second and third pregnancies, and the infants were delivered early to minimize difficulties. According to him, it was an uncommon incidence that highlights the many unknowns regarding the risks of umbilical cord anomalies.
Cord accidents are likely neglected because they occur on a continuum, making them difficult to diagnose prenatally, according to Abuhamad. He claims that even when a diagnosis is made, there are no standardized treatment protocols because there is a dearth of relevant research and teaching.
According to Uma Reddy, a professor of obstetrics, gynaecology, and reproductive sciences at Yale University, the Stillbirth Collaborative Research Network published the largest and most thorough research of stillbirths to date in 2011. The study included 663 women who had stillbirths and 1,932 women who had live deliveries, and found that umbilical cord anomalies were responsible for 10% of stillbirths. Cord anomalies, as a potentially preventable cause of stillbirth, warrant an additional inquiry, according to the organization.
In 2020, Reddy and colleagues from the University of Utah reexamined the data from the 2011 study and discovered that blood flow through the cord was a factor in half of the stillbirths related to umbilical cord anomalies. “There is, therefore, a desire to comprehend this,” she explained. “It could be a risk factor for stillbirth.”
The fact that academics can’t even agree on how to characterize umbilical chord anomalies adds to the problem. The Oxford Textbook of Obstetrics and Gynecology, which is considered a leading comprehensive resource for physicians, has less than a page on umbilical cord accidents in the 2020 edition and only mentions two possible abnormalities: cases where the cord inserts in the wrong spot and cords with two umbilical vessels instead of the usual three.
Umbilical cord abnormalities, according to a study published in the journal Medical Science Monitor in 2019, can be classified into numerous categories and subcategories. The report also mentions improper cord length, cysts, and blood clots along the chord, in addition to aberrant insertions and the inappropriate amount of veins. Cord knots are one of the most dangerous anomalies, according to the study. Loose knots, sometimes known as false knots, are common and do not need to be addressed. However, a genuine knot, which was the cause of Miller’s stillbirth, happens in about 2% of births and puts the fetus at risk of stillbirth.
In the Medical Science Monitor survey, the most contested category is when the chord encircles the fetus’ body. The cord can wrap around a limb, but it’s more common to have it loop around the neck, which is known as a nuchal cord. Up to 37% of births are affected by nuchal cords. A chord looping around the neck or another area of the body is usually not a cause for concern, which is why it’s frequently left out of stillbirth studies as the only cause of death. Multiple loops, however, can cause major difficulties, including stillbirth, according to a study published in the Medical Science Monitor.
Despite the lack of proof, Collins believes that all of these abnormalities, as well as several more variations within the categories, can result in stillbirth if they go undiscovered. Collins attributes the inability of the medical community to agree on which cord abnormalities contribute to stillbirth to an “educational void” in obstetric medicine.
Despite the lack of agreement, Collins believes that the best way to reduce stillbirths caused by umbilical chord accidents is to increase screening. In a paper published in the journal BMC Pregnancy and Childbirth in 2012, he spelt out his recommended protocol.
Between weeks 18 and 22, routine prenatal care often includes one or two ultrasounds utilizing a two-dimensional Doppler—which displays a flat, two-dimensional image on a screen—to check on fetal growth and health. Most technicians do inspect the umbilical cord during these screenings, but they simply look for blood flow and the right number of cord veins. Collins’ strategy calls for more imaging with a 3D or 4D Doppler, which allows a doctor to assess the fetus’s and cord’s nooks and crannies.
Collins also believes that at-home heartbeat monitoring should be used more widely to detect prenatal stress. If pregnancy is at-risk, pregnant women generally visit a doctor’s office or hospital during the day for fetal heartbeat monitoring—this is the same test Miller’s doctors did to confirm her stillbirth. Collins believes that doing it at night is preferable since the parent’s blood pressure is lower and the most common symptom of fetal distress—brief reductions in the fetal heart rate—is more likely to occur.
According to Collins’ policy, if additional screening reveals an umbilical cord tissue, the pregnant mother should be admitted to the hospital and the infant should be watched for 24 hours. If the fetal behaviour or heart rate is aberrant, the medical team should extend the observation time according to protocol, and if there are still signs of fetal distress, the medical team should consider an early delivery—by Caesarean section or induction.
Many pregnant women tell Collins that they don’t feel like they’re getting the medical attention they need following a stillbirth. Miller, for example, sought counselling from Collins in her third trimester when she fell pregnant again in 2019 with Lincoln, her “rainbow baby,” as parents sometimes refer to pregnancy after a loss. Her doctors, on the other hand, were insulted that she did her research, she claims.
She claims that they treated her as if she were hysterical, ordering her to remain off Google and cease talking to Collins. She claims that when she provided the team with her research and interactions with Collins and asked for further cord testing, they told her that it wasn’t common practice. “Which made me feel awful since I didn’t want the typical practice of treatment after losing Leighton,” she says. “To bring Lincoln home, I wanted the best of the best.”
Collins, who just retired, nevertheless receives daily emails and phone calls from concerned parents and advises them on how to present their research to their doctors. Many of these parents, like Miller, tell him that their medical teams make them feel insane or that they are behaving out of grief by demanding care that is regarded outside the norm.
The word “standard of care” refers to a legal term rather than a medical one. Jill Wieber Lens, a law professor at the University of Arkansas who specializes in stillbirth and medical malpractice, explains that defining the standard of care can be difficult because, in many cases, especially when it comes to stillbirth prevention, the best option for the patient may not always be obvious. In certain circumstances, a doctor may stick to the basic standard of care, but in others, they may choose for additional screenings or treatment. Doctors don’t have to be concerned about malpractice if they follow the standard of care, she argues. But it’s dangerous malpractice if doctors do something “inconsistent with the standard of care” and something awful happens.
Collins’ protocol will not be recognized as part of the standard of treatment unless it is recommended by professional groups. According to Lens, most doctors will refuse to utilize a novel or experimental test if ACOG does not recommend it. She also points out that jurors in medical malpractice cases don’t have a lot of leeways. They must assess whether the doctor followed the professional standard of care, with some limitations.
Changing the standard of treatment would necessitate widespread support from the obstetrics community. Karen Finkelstein, an ACOG member and medical team leader at Southwest Women’s Oncology in Albuquerque, New Mexico, where she specializes in gynecologic cancers, says, “It would require rewriting entire protocols and recognizing we can do a better job.”
Finkelstein’s kid died in an umbilical cord accident at 32 weeks, the same day her obstetrician gave her a reassuring non-stress test. His head was buried deep in her pelvis, tugging forcefully on the cords, and he was born with two nuchal cords. She has delved deep into the field of fetal monitoring and pregnancy since her stillbirth, and she says she is “underwhelmed” by the present rules.
Finkelstein followed Collins’ procedure for her two subsequent—and successful—pregnancies. She claims, “We can change the outcome of the majority of stillbirths at a low cost.” “However, we’re not going to do it.” It doesn’t make logic to me.”
Finkelstein wrote to ACOG in 2020, expressing her displeasure with the lack of attention given to umbilical cord abnormalities in their most recent bulletin on stillbirth care, noting that the publication does not include nuchal cords as a cause of stillbirth. Finkelstein pleaded with the group in her letter for more screening and access to at-home fetal monitoring. She characterized ACOG’s response as “passive.”
According to Radek Bukowski, a professor and associate chair of discovery and investigation in the department of women’s health at Dell Medical School at the University of Texas at Austin, updating an ACOG standard of care requires extensive research to determine and understand potential links between cord accidents and stillbirth. He argues, “Any alteration in the standard of care must be properly supported.” Interest, funding, and involvement are all required for the research to be carried out. All of these are now insufficient, according to Bukowski, who claims that there isn’t enough data to even determine how frequently any umbilical cord accidents—let alone the more contentious ones—contribute to stillbirth.
He adds that discussing the next steps—detection and prevention—until there is adequate information to demonstrate a direct link between cord accidents and stillbirth and assess the severity of that link is futile and potentially hazardous, as it may promote unwarranted medical procedures.
Collins believes that there is enough evidence from human and other mammalian studies to support routine screening for umbilical cord anomalies. He cites a 2015 study published in the German Society of Gynecology and Obstetrics journal that shows the ability to detect cord abnormalities prenatally with a Doppler, which he claims could prevent about half of all stillbirths attributed to umbilical cord abnormalities—thousands of stillbirths worldwide.
Other analysts, on the other hand, believe the situation is still unclear. “There is evidence to substantiate the link between Collins’ findings and bad pregnancy outcomes,” Abuhamad says, praising Collins’ commitment to the study. “He’s adding to the conversation, which will continue.”
Additional screening for umbilical cord issues, according to ACOG, may not assist. According to Zahn, screening is a population-based tool rather than an individual one. This means that the benefits of reducing negative outcomes must outweigh the risks. While additional research is needed, he emphasizes that “it’s vital to understand that there is continuous research in these areas.” “We will lessen the risk if we can.”
Increased fetal screening has several drawbacks. Extra testing can cause anxiety in pregnant women, and misdiagnoses can lead to unnecessary labor inductions and C-sections, according to Cathrine Ebbing, an obstetrician at Haukeland University Hospital in Norway and an assistant professor at the University of Bergen in Norway. Premature births would account for many of the inductions and C-sections. Premature babies, defined as those born before 37 weeks of pregnancy, often suffer serious health concerns as well as feeding and respiratory difficulties. According to the American Academy of Pediatrics, these babies have a higher risk of developmental delays, cerebral palsy, and hearing and visual loss than full-term babies. As a result, Ebbing warned in an email that greater fetal screening may “do more harm than good.” “It’s quite tough to strike the right balance.”
When one of her patients died during delivery due to a chord defect that had been discovered before birth, Ebbing became interested in umbilical cord disorders as a young physician. According to Ebbing, the encounter left an indelible impression on her. She is currently researching to see if routine ultrasound screening for specific cord problems is feasible.
Ebbing claims that information about umbilical cord concerns was restricted at the beginning of her career, but that this is currently changing. Ebbing remarked, “When I was a trainee, I was assured that a cord knot could not be the cause of death.” “Now, I and many others believe it is a cause of mortality in some cases.”
Ebbing and her colleagues discovered in a 2018 investigation of specific cord anomalies that having them in one pregnancy more than doubled the probability of recurrence in a subsequent one. She claims that routine cord screening is quick and painless and that it may be done in all pregnancies or just those at higher risk. In Norway, investigations are being conducted to determine the viability of this, but it is not yet regular practice. However, it is unclear whether the findings will apply to other countries. In Norway, public health care is universal and free, and cost-effectiveness is a primary element in expanded screening and education. Norway’s population is likewise very homogeneous, making statistics comparisons with the United States challenging.
And not every screen is the same. According to Eran Bornstein, a maternal-fetal medicine specialist and director of the department of obstetrics and gynecology at Lenox Hill Hospital in New York City, ultrasounds—whether the more common 2D version or the 3D and 4D models that Collins recommends—are “the most operator-dependent of all scans.” “The machine is just as good as the person using it.”
On a typical ultrasound, the vasculature, cord insertion, and blood flow are the bare minimum of cord screening. Bornstein’s team utilizes a color Doppler to detect if the cord is near the cervix, which could signal a cord insertion anomaly or a danger of cord prolapse, which occurs when the cord enters the cervix before the baby and causes cord compression during delivery. But, he notes, it isn’t necessarily a conventional procedure, and if done incorrectly, could bring “more concern than value.”
When it comes to greater cord screening, Bornstein says, “a closer look could be great.” “If it’s in the proper hands,” says the narrator.
Kristen Miller sought care from a different medical team inside the same facility when she became pregnant again in 2019.
In the third trimester, Lincoln had a lot of hiccups. Collins had advised her that daily hiccups occurring after 28 weeks and more than four times a day required fetal assessment since fetal jerking motions and extensive fetal hiccups could be caused by fetal blood flow irregularities, particularly cord compression. (This recommendation is based on animal studies; no human studies have been conducted for ethical reasons.)
“Every week, I brought it to the attention of the care team,” she says. They had no idea there was a problem, she claims, but thanks to Collins’ research and advice, she was able to explain that it could signify a cord issue. The infant was also agitated. She says, “He was going insane, and it worried me.”
Lincoln was born by early induction at 37 weeks in March of last year, following Collins’ prescription of weekly non-stress testing and ultrasounds. Miller’s obstetrician had suggested the strategy early in her pregnancy because she believed it would give her the best chance of avoiding a cord-related stillbirth while avoiding the health concerns associated with premature birth. Miller pointed out that while there is no noun in the English language to define a mother who has had a stillbirth or lost a child, there is a term to describe other people who have lost a child—someone who is divorced, widowed, or orphaned. She prefers to call herself a “loss mom.” She believes that this linguistic void is linked to a lack of awareness. As a result, she’s become an advocate for “loss moms,” and in the summer of 2019, she became the secretary of the Star Legacy Foundation, the nation’s foremost stillbirth advocacy organization. She emphasizes the significance of Collins’ findings and refers other bereaved mothers to him if they have a history of umbilical cord problems. “You can bear it silently and alone, or you can get out there,” she says.