Tiny Bundles of Distress

Carrying twins, Jennifer Hall did not expect what was about to unfold from a regular exam at 25 weeks along. Though she had been on bed rest earlier and suffered from high blood pressure, she felt healthy. Yet the doctor told her she needed to be hospitalized. Calling her husband Nick to bring books and magazines, Hall thought she would spend the four remaining months of her pregnancy in repose, awaiting a visit from her mother, who had yet to see her growing abdomen.

“I was totally ill-prepared for what was to come,” Hall said.

Only days later, on Thanksgiving morning in 2006, Hall’s babies–Graham and Reece–were delivered, as she slipped into a medication-induced sleep that lasted three days.

After waking up, Hall needed a couple more days before she finally saw the babies at a Neonatal Intensive Care Unit (NICU).

“They were 1 pound, 9 ounces and 1 pound, 4 ounces,” Hall said. “They were essentially fetuses. I remember reading in a baby book that they were barely viable. Their skin was tissue-paper-thin. You could see everything. You could see organs. The eyes were still shut.”

Having arrived at 25 weeks, the twins were severely premature. Every year, approximately 4 million babies are born in the United States. Some 380,000 of them are preterm, born after 20 weeks of gestation but before 37 weeks. In 2016, the most recent year for which the maternal and infant health organization, March of Dimes, has data, the premature rate in the U.S. logged at 9.8 percent. The World Health Organization ranks the U.S. among the 10 leading nations for preterm births; indeed, it is the sole representative of Western developed nations, cliqued with countries like India, China, Pakistan, Nigeria and Bangladesh.

Within the U.S., the rate of prematurity varies from state to state. Some of the best performers cluster along the West Coast and New England. The worst percentages plague the South and portions of the Midwest. Florida registered a rate of 10.2 percent last year, according to the Florida Department of Health. This marked an uptick from two years ago, when the percentage of prematurity had dipped to 9.9 percent.

“This is not only true in Florida, this is true nationwide,” said Dr. William Sappenfield, director of the Lawton & Rhea Chiles Center for Healthy Mothers & Babies at University of South Florida’s College of Public Health. “Part of it is, do we really understand why our preterm birth rate is going up, do we understand why it is going down?”

While research has produced many feasible but no definitive answers, the reduction in premature births could be partially due to a shift in hospitals to avert early deliveries. And yet, in some instances, those could be imperative to avoiding complications with the mother’s health or that of her child.

To an extent, that was the case with Hall. She had developed severe pre-eclampsia and HELLP syndrome, a rare condition characterized by the breakdown of red blood cells, elevated liver enzymes and low platelet counts.

Her twins were born so early that their chances of survival edged close to nil. Babies born between 23 and 28 weeks face a relatively insurmountable risk of mortality, said Dr. Mehmet R. Genc of University of Florida Health Women’s Center. Graham was not strong enough to fight, Hall said. He caught an infection and passed away at 45 days old. Reece, however, beat the odds despite the string of required brain and heart surgeries and the toll they exerted on the family. After four months at an NICU, she came home, but visits to the hospital continued.

“I remember at one point, I was wearing the same two outfits–I kept alternating them, I mean, I washed them–but I didn’t care what I was wearing,” said Hall. “And for four months, every single day, it was peanut butter and jelly–I mean, it is truly survival. I was not thinking. I did not want any pleasure.”

Hall, who at the time lived in California, felt lonely. Neither she nor her husband knew any other couple who had gone through an ordeal like theirs. They had relatives and friends, and they had each other; yet they didn’t have anyone who could truly comprehend what they were experiencing and console them. That’s why the Halls decided to do something–once the worst had passed and a sense of normalcy returned.

And they did. After 11 years, Reece is a fifth-grader with a gift for music and the arts. All along, she reached the usual childhood milestones, though with a delay. So she began school late. Today she struggles with the same issues many kids do. Math is a challenge. So is staying focused on a single task.

Keeping a balance proves a bit tricky sometimes, yet Reece swims and jumps and plays and does karate. “If I didn’t tell you, you would not know” she had been born prematurely, Hall said.


Ways to cope

The Halls began Graham’s Foundation to support parents of preemies, as premature babies are often called, through care-package programs, mentorships, advocacy and research.

“The idea was that parents could know that they were not alone,” said Hall.

For Hall, the foundation is a means to offer what she sought–an assurance that life will be fine. Together with a group of mentors, she often connects with parents, who look for someone to talk to. Sometimes her daughter joins her. They face-timed with a mother from London, whose preterm baby had hydrocephalus, a fluid build-up in the brain that Reece also had developed.

“She was very, very scared about hydrocephalus and really wanted to see that someone with hydrocephalus walks, talks, thinks,” Hall said.

The fast growth of social media has also helped parents cope. A slew of Facebook support groups, for instance, offer forums where insight and understanding flow–from discussions on NICU stays to threads about health progress to conversations about clothes that fit tiny babies. Some have thousands of members. Their spread, in part, underlined the advent of family-centered care and kangaroo (skin-to-skin) care, in which physicians actively solicit parents’ input and assist them.

These are practices that the Florida Department of Health in Duval County has already embraced. In its goal to reduce infant mortality, a frequent outcome of preterm birth, the agency provides home visitations for at-risk families and first-time mothers.

“One of the dual initiatives that we are looking to implement here in Duval County is called the Implicit Model, because what we see is that moms are more likely to go and get support and care for their children than they are for themselves,” said Karen Tozzi, director of maternal and child health.

The program requires providers to query mothers about their health during their babies’ first pediatric visit. Focused on tobacco use, postpartum depression, birth control and vitamin intake, the questions gauge the services a mother may need for herself.


From the worst, hope

Almost a decade later, Tiffanie Williams, a therapist and a Jacksonville native, followed a painful path similar to the one that the Halls had walked. And, like them, she had found a way to give it larger-than-herself meaning.

Unlike Jennifer Hall, however, who had to have an induced premature delivery, Williams had an incompetent cervix. Cervix insufficiency, as the affliction is also known, causes the cervix to dilate in the early stages of pregnancy, often resulting in premature birth or miscarriage.

Williams’ son was stillborn, throwing her into depression and grief. Exacerbating her heartache was the fact that Liam was very tiny–only 10.6 ounces–and there were no baby clothes to fit him. She had to wrap his small body in blankets and lay him to rest.

“That really disappointed me,” Williams said. “It really hurt me.”

Because of this, the foundation that Williams began, Liam Lives, offers garments appropriate for teeny babies, among other programs like counseling and education.  It’s the educational program that Williams finds crucial.

She did not know what incompetent cervix was until it affected her life. Her doctor never mentioned it, either, despite a past miscarriage, which could have increased the risk.

“Now, had I known then what I know now, I would have advocated to see a high-risk specialist because of my history,” Williams said. “But that was not provided to me. I was not told, ‘You know what, because of your history, we should refer you to a high-risk doctor.’”

Sometimes, however, it boils down to women raising their voices to seek better care. In her work with the foundation, Williams noted a pattern of dismissed symptoms and mothers’ reluctance to challenge their healthcare providers.

“You know, being able to say with assertiveness, ‘Hey, something is not right. Even if it is a false alarm, even if I am overreacting, I need you to see me because is a baby’s life is worth just that,’” said Williams. “It’s almost like you are hiring this doctor. You are hiring them to provide a service for you. If you aren’t satisfied with those services, like anything else, you fire them, or you go somewhere else.”


The revolving door of healthcare

When it comes to healthcare and its role in preventing preterm births, there’s more to it than conscientious physicians and informed patients. Often, it’s all about access to services, said both Dr. Sappenfield and Dr. Genc in independent interviews.

Pregnant women, even those in higher income brackets, are eligible for Medicaid, a rule meant to ensure that as many women as possible can afford checkups and prenatal care. Yet, preterm-birth factors are in place–and require attention–prior to conception.

“By the time you get pregnant, you have very little [opportunity] to make any significant change of the health of the woman,” said Dr. Genc. “Really, this has to be addressed starting from childhood into teenagerhood and certainly before pregnancy.”

While a measured lifestyle–no excessive drinking and smoking, for example–can mitigate some of the hazards, others may call for medical insurance, which 11 percent of American women from ages 19 to 64 did not have in 2016, according to The Henry J. Kaiser Family Foundation.

“We do not have health insurance that covers a lot of the population” in need of medical help, said Dr. Sappenfield. “That creates a challenge.”

For instance, the drug 70-hydroxyprogesterone can lower the risk of premature delivery, but the lack of a health plan or the switch to one could place it out of reach for many women. In some instances, any gaps in providers could also hamper treatments for hypertension and diabetes, which linger between pregnancies and impact their outcome.

“We are now discovering that it may be as important that we help women with their healthcare prior to getting pregnant as it is for us to help them during pregnancy,” said Dr. Sappenfield. “But we don’t have health insurance that covers a lot of the population in which to do that.”


Not only babies, but mothers too

In the most tragic of cases,such ailmentsnot only affect the health of a baby, but also the life of its mother. The U.S. is the most perilous developed country for pregnant women, according to a USA TODAY investigation.

In 2015, the most recent year the World Health Organization has data for, nearly 900 American women have died of direct or indirect pregnancy-related factors. For the same year, a systematic analysis on maternal mortality, published in The Lancet in 2016, puts the U.S. number a little over 1,000 or at a ratio of 26.4 per 100,000 live births, continuing a steady spike taking place over the course of two decades.

USA TODAY contends that doctors and nurses could prevent half of maternal deaths with simple actions, such as measuring blood loss during and after birth and treating high blood pressure. The predicament is that many fail to do so, while others dismiss women’s health concerns.

In Florida, according to its 2016 maternal mortality report, nearly 60 percent of fatal pregnancy-related complications had a “strong chance” to be altered and almost 14 percent had a “possible chance.” Death causes, at least 50 percent of which could be successfully treated, included cardiomyopathy, hemorrhage, thrombotic embolism, infection, hypertensive disorder and cerebrovascular problems.


In the genes of society

Racial disparities plague the rates ofboth maternal deaths and preterm births. The heterogeneity of the U.S. population–from ethnic diversity to educational attainment to wealth possession–make it hard to consolidate recommendations and solutions.

Certain groups, like African-American, have heightened probability of lethality and prematurity, regardless of their education and income. Williams, the founder of Liam Lives, is an example that social status has little influence on preterm birth.

“I look at my situation being that I am very educated, I have a doctor degree, I am not poor, I am, for the most part, middle class, and even with my education, even with my income, I was still in a place where I lost a child,” Williams said.

Some experts have explained this unfortunate peculiarity with ingrained racism and the psychological strain it puts on women of color. This could also relate to migration, as evidence indicates that the risk of preterm birth spikes in groups after they move to the United States, and begins to manifest in the second and third generations of new Americans. In the reverse cases, preterm births decline when immigrants return to their homelands.

“The point is that the environment plays a significant role,” said Dr. Genc. “Although there might be genetic factors that predispose a certain group to preterm birth, it is usually the interaction between the genetic background with the environmental factors. The combination of the two increases preterm birth–it is not purely genetic.”


Work ahead

As nature and nurture fuse, new research is promising novel methods to avert preterm deliveries. One of the latest discoveries is a link between microbes in the mother’s vagina and the likelihood of spontaneous premature birth. Correcting any abnormalities in the former diminishes the latter in what is a “very exciting” new treatment possibility, said Dr. Genc.

Other studies have homed in on maternal biomarkers–substances in the body that indicate a biological state–that could indicate the possibility of having a baby before full term. A recently published paper describes a blood test that looks at 25 biomarkers during the second trimester, which could reveal inflammation and abnormal protein levels associated with probable preterm birth.

“Our test was able to predict 80.3 percent of women who went on to have any preterm birth, at 15 to 20 weeks gestation,” Laura Jelliffe-Pawlowski, associate professor and director of Precision Health & Discovery at the University of California, San Francisco, told CNN.

While research is delving into the complexities of preterm birth, practical corrections could be as mundane as an aspirin for mothers at risk of pre-eclampsia. Yet Dr. Sappenfield cautioned against the demand for simple answers.

“Preterm birth is a medically and socially complex health outcome,” he said.

“We continue to need to fund research to better understand it, so we can address its issues. Our preterm birthrate is almost twice that of the other developed countries. So we have a lot to work on so that we can make [healthy] babies.”