The deadly pregnancy complication you've never heard of

In 2012, Koiwah Koi-Larbi was 25 weeks into her first pregnancy and all blown up. She and her family were excited about the swelling of her legs, feet and hands. In Ghana, she told DW, getting really big during a pregnancy is a clear sign a boy is on the way.

But Koi-Larbi noticed other symptoms alongside the swelling. She was getting headaches and something called epigastric pain, an ache in the upper right part of the stomach. She had heartburn and was seeing "all sorts of spots." When she communicated her symptoms to her nurse, she was told "that's how it is."

One of the challenges of the diagnosis Koi-Larbi would eventually get — preeclampsia — is the fact that many of its symptoms can be hard to recognize by pregnant women themselves and by health care providers, like her nurse, who aren't trained to spot them.

Preeclampsia is one of the main causes of maternal mortality across the globe. It is characterized by high blood pressure in pregnancy, something women often cannot actually feel.

"You might have [high blood pressure] and not notice it," said Joyce Browne, an associate professor of global health and epidemiology at UMC Utrecht in the Netherlands. Browne said that if you do notice it, you may notice symptoms like Koi-Larbi's or "a general sense of not feeling your usual self."

The prevalence of preeclampsia varies from country to country. The World Health Organization (WHO) estimates rates are around seven times higher in developing countries than in developed one. Globally, it causes around 12% of maternal deaths per year.

Stages of preeclampsia: Seizing, coma, death

Later in the month, Koi-Larbi started seizing and was rushed to hospital at 2 a.m in the morning. She was told she was having eclampsia — the result of untreated preeclampsia, which can lead to a coma and even death if not treated in time.

The only thing that could save Koi-Larbi and her baby at that point was an emergency cesarean section.

On the way to the hospital, her then-husband had spoken with her mother on the phone. Her mother was not surprised about her daughter's condition. "Oh, that's my disease," she told him.

Koi-Larbi said this was the first time she heard her mother had experienced preeclampsia.

Browne said she advises all women who go through a pregnancy to ask their mothers if they had high blood pressure in their own pregnancies.

"It's an important risk factor," she said. "If you know your mom had it, it's reason for you to be extra vigilant."

Koi-Larbi met her baby three days after delivery. He was tiny, she said, too small to breastfeed, and 48 hours later, the infant developed a complication before passing away. "We were broken," she said.

Second and third pregnancies

Koi-Larbi was determined to have a child. In fact, she said, her dream was to have five. She got pregnant again a year later in 2013.

Five months into the pregnancy, she traveled to the United States to carry out the rest of her care. And again, she experienced late onset preeclampsia, but was able to successfully deliver a baby girl at 37 weeks.

Motivated by the positive birth experience, she got pregnant a third time in 2017. She experienced the same symptoms she had seen in her other pregnancies, but they were less intense. This time, she said, she was mostly just exhausted.

At 26 weeks, she went to the hospital to get her blood pressure checked. She wasn't experiencing any intense symptoms, but knew because of her previous pregnancies that these checks were crucial. Her blood pressure was 150 over 100 — high enough for the doctor to recommend admitting her to hospital.

On Koi-Larbi's fourth day in the hospital, a midwife checked the baby's heartbeat and couldn't feel anything. A doctor confirmed she had lost the baby. The medical team performed a surgery to remove the dead fetus from Koi-Larbi's body, saving her own life.

"At this point, yeah, I was traumatized. I was asking questions. I was like, two times, that's a lot," Koi-Larbi said.

During her recovery, she started looking for answers online. She found preeclampsia support groups, but only in the US, UK and Australia. She communicated with them and started her own help group, which she called Action on Preeclampsia Ghana.

Koi-Larbi's goal was to provide information about the condition and raise awareness among both women and health care providers.

She wanted to partner with researchers to find ways to improve the situation in Ghana. And she wanted to offer a central point where women who experienced preeclampsia could access counseling.

"In our context, it's not easy to speak of or talk of your mental health and so unless you have a supportive husband and supportive family during this kind of traumatizing moment, you are left to deal with these kinds of things by yourself," said Koi-Larbi.

HELLP Syndrome: preeclampsia at its worst

In 2019, with Action on Preeclampsia Ghana up and running, Koi-Larbi, and armed with years of knowledge, became pregnant a fourth time.

"There was so much hope for this one," she said.

But this time, she developed HELLP syndrome, the most severe form of preeclampsia, and had to deliver the baby to avoid losing her own life. The 1kg infant died three days after birth.

Three delays: Ways of seeing maternal mortality

Maternal health is an indicator of how a health system functions, said Browne, and how much we prioritize the health of women.

"The majority of women are healthy when they start a pregnancy. But there [can] be complications that require timely and good quality care. And if you don't have access to this timely and good quality care, [it can mean] adverse outcomes, and adverse outcomes can be literally lethal."

Experts such as Browne look at maternal mortality through something called the "three delays" model.

The first delay occurs in the woman herself — she doesn't think her pain is serious enough to warrant medical attention and ignores it.

The second delay is logistical — the barriers a woman can face when trying to reach a health care facility. These are especially high in remote village areas, where women may live hours from a facility.

The third delay is quality of care once the woman reaches a hospital.

Titus Beyou, a Ghanaian doctor, whose research has focused specifically on preeclampsia, said that once women make it to hospital, the quality of communication between them and their doctor can determine that third delay.

It is not uncommon for a pregnant person to be told they need to end the pregnancy and deliver the baby immediately without getting an explanation of why or understanding what the doctor is saying, said Beyou.

This may lead the patient to reject treatment for their condition, simply because they don't understand what is happening. 

Koi-Larbi said it was a failure to communicate like this that led to the death of her first baby. "Ignorance killed my baby," said Koi-Larbi. "It wasn't communicated." 

It is a bitter irony that even when women have access to the health care they need, some may even reject treatment because of their religious beliefs. It can lead to another form of misunderstanding, said Beyou.  

"They'll ask: 'Why do you want to give me a preterm baby?'" They won't accept treatment — crucial, life-saving early delivery of their baby — until they have consulted with their pastor, he said.

Hospitals in Ghana have considered addressing this problem, said Beyou, by hiring chaplains to work on-call in their facilities. But Ghana has many different religions, and many different denominations of each of those religions, said Beyou, so it's not a catch-all solution.

But perhaps that's the point: Each woman and their pregnancy is individual and unique. Just as Koi-Larbi found, each of her pregnancies were different. The experts are saying that care in pregnancy is not only about the birth or when there is an emergency. Care has to start right at the beginning.

Edited by: Zulfikar Abbany