Lisa Akey doesn’t say the potential names of her twins. The 38-year-old Brookline, New Hampshire mother of one calls them Twin A and Twin B.
“We're going to have to say goodbye to one child,” Akey said. “Having already chosen names just makes it harder.”
When Akey was 21 weeks pregnant, doctors told her one twin had no chance of surviving outside the womb. That twin also threatened the life of the other, healthy twin.
As Akey has tried to understand how to keep her healthy baby alive, she’s had to navigate a complicated landscape of specialty medical care, all in the wake of New Hampshire’s recent restrictions on abortion after 24 weeks.
And the experience has made Akey more active around local abortion legislation at the New Hampshire State House, issues from which she admitted she felt previously detached. While she said she’s been supportive of reproductive rights, her own experience has shown her why people may need to get an abortion so late in a pregnancy.
But her story also demonstrates how rare these kinds of abortions are in New Hampshire.
A complicated, high-risk pregnancy
After Akey and her husband received the diagnosis in New Hampshire, the two visited specialists in Philadelphia for a second opinion.
In some cases, the couple learned, an abortion has the potential to save the healthy twin’s life.
“In a sense, one baby gives her life so that her sister can have a life,” Akey said.
But the procedure has risks. For Akey, they’re amplified by another medical condition her twins have.
The twins are monoamniotic, meaning they share a placenta and the fluid-filled sac that protects the fetus in the womb. Alone, it’s already a condition that makes for a high-risk pregnancy.
“The specific consequence is that their [umbilical] cords can get tangled up,” said Dr. Emily Baker, a maternal fetal medicine specialist at Dartmouth Hitchcock Health, about the condition. “If the cords get tangled up, there's a higher and higher chance of one or both of them dying.”
The couple decided not to get the abortion procedure, but they haven’t ruled it out completely, based on their Philadelphia doctors’ advice.
“Our doctors were clear that the twins' condition can change at any time,” Akey said. “[They said] we should be prepared and know what our options are with our care providers locally.”
Navigating specialty medical care, in the shadow of N.H.’s new abortion law
But at home in New Hampshire, her care has become more complicated as her pregnancy has progressed.
This Friday, Akey hit 24 weeks. It’s now illegal for her to get an abortion in the state.
The law makes no exceptions for cases like hers, or for rape or incest. After it was implemented this year, it also places a felony penalty and fines of up to $100,000 for doctors who provide abortions after 24 weeks. OB-GYNs worry the law will make the state a less desirable place to work for maternal fetal medicine specialists.
Last year, Akey had watched, but not closely, as the bill moved through the State House, into the budget and into law.
“[At the time], I had no idea what kind of complications can come up late in pregnancy,” she said.
The landscape for late-term abortions in New Hampshire
Dartmouth Hitchcock Health conducts some of the latest abortions in the state.
But even prior to the law’s passage, Dartmouth Hitchcock Health didn’t do any abortions after 24 weeks. They'd refer patients who needed to end a pregnancy after 22 weeks and 6 six days out of state.
Elliot Hospital in Manchester, where Akey received some of her care, declined to comment on how late into pregnancy they were providing abortions before the new law, but says they are compliant with state law.
Nationally, fewer than one percent of abortions happen this late in pregnancy, according to 2019 CDC data.
Baker at Dartmouth Hitchcock Health said doctors there wouldn’t have conducted the procedure Akey was considering, due to her twins’ monoamniotic condition.
She said Dartmouth routinely sends patients who need this type of care outside of the state to other specialists.
“We're a small state with a small number of people,” she said. “No matter what circumstance, we would not be managing this procedure,”
But Baker has observed the stress that time pressure adds to these agonizing decisions.
“People need time,” she said. These are decisions with “enormous consequences.”
Akey agrees, and it’s part of why she wants “to be able to make these really sensitive decisions with [her] doctor,” based on medical advice, without interference from the law.
Dalia Vidunas, executive director of Equality Health Center in Concord, said parents considering an abortion after 24 weeks are usually doing so because of serious, often fatal medical complications. She said it’s not because they’ve suddenly decided they don’t want to be parents.
“If this was a really wanted pregnancy,” Vidunus said, “[the bans don’t give] the person enough time to grieve the loss.”
While a ban at 24 weeks in New Hampshire may not significantly alter the current abortion landscape in the state, abortion rights advocates worry it could facilitate more restrictive future laws.
Even this year, GOP lawmakers introduced a bill at the State House to ban abortions after the detection of a fetal heartbeat, which is around six weeks, although it didn’t get support from a key committee.
Abortion restrictions don’t have broad support in New Hampshire. Only one in three Granite Staters support New Hampshire’s 24-week abortion restrictions according to a July survey from the University of New Hampshire.
Weighing the risks
Right now, Akey and her husband have decided on a “watch and wait” approach. They’re hoping they can wait to have a premature delivery, which carries its own risks.
Babies born too early have higher rates of death and disability. In 2019, preterm birth and low birth weight accounted for about 17% of infant deaths, according to the CDC.
In this difficult, but best-case scenario, at 28 weeks, Akey will be admitted to a hospital for constant monitoring. She’ll give birth at around 32 weeks. Her healthy twin will likely have to spend time in the Neonatal Intensive Care Unit, and she’ll have to say goodbye to the other one.
But the abortion procedure’s availability complicates the couple’s reasoning as they plan their medical decisions.
Even if it's unlikely she’ll need it, Akey wants every possible tool to help her healthy child survive.
She’s trying to weigh the risks inherent in any decision she makes, knowing no matter what happens now, an abortion in New Hampshire is unavailable.
“Delivering an extremely premature baby, or having the procedure and giving the healthy baby more time to grow and develop in the womb?” Akey said.
It’s a question Akey and her husband are trying to figure out, in real-time, when the stakes are incredibly high.
Disparities in health care access
With access to excellent medical care, both in and outside of the state, Akey is well-poised to see the best possible outcome of her high-risk pregnancy. She and her husband can afford to travel for high-quality care if necessary.
Their family is supportive. Child care for their one-year-old daughter isn’t a concern. Their employers have been understanding and flexible.
“We have a community of support behind us,” she said. “Even as we’re in a very challenging season of our lives.”
Still, as the couple plans for what could be months in the hospital, they’re wary. They're worried future medical bills and trips to see specialists could set them back on financial goals even with insurance.
“We don't own a home yet. We're renting,” Akey said.
The couple is already fighting an insurance bill for their out-of-network trip to Philadelphia to see specialists.
For people with medically-complicated pregnancies or who need a second-trimester abortion, the costs for a medical procedure could be especially prohibitive. Even if you have insurance, your plan matters a lot.
“New Hampshire Medicaid does not cover [an abortion] at all,” Vidunas said.
In New Hampshire, Medicaid will only cover abortions, regardless of the stage of pregnancy, when it’s a result of rape or incest or if the pregnant person’s health is in danger. And for those with insurance, going out of state can mean going out of network.
Longstanding disparities in access to quality health care, as well as systemic racism, means that Black, Native American and Alaskan Native women have higher rates of pregnancy-related death than do white women, a brief from the Kaiser Family Foundation found. Infants born to women of color are also at a higher risk of dying in their first year of life than those born to white women.
The Equality Health Center’s Dalia Vidunas said the center works with pregnant people grappling with decisions like those Akey is making, who often have fewer resources.
About once a month, Vidunas said, the health center gets a call from someone about their options for abortion in their second trimester.
“Transportation and child care are some of the biggest barriers. Most women that get abortions are already moms.”
Sometimes the calls come from Granite Staters. But other times the calls come from people out of state, calling any phone number that might offer them a line to resources.
Often, Vidunas explains, the person has just received a diagnosis of a fatal fetal anomaly.
It's calls like these, she said, that clarify laws aren’t the only mechanism limiting options.
“Transportation and child care are some of the biggest barriers,” she said. “Most women that get abortions are already moms.”
Rallying her community
Neighbors and friends have called Akey to ask her if they can bring over a hot meal or offer child care. Akey has a different task in mind.
“Write to your representative,” she said she tells them. “Tell [lawmakers] that it's important to support reproductive rights. And you can reference my story.”
She’s keeping a close eye on abortion bills at the State House, even though she knows they won’t change anything for her pregnancy.
Attempts to fully repeal New Hampshire’s abortion law have already been sidelined. There are bills moving forward that would add exceptions to the current law, in cases of rape, incest, and fatal fetal anomalies and remove criminal and financial penalties
Some bills would amend the law’s ultrasound requirement, and require it only when the fetus may be 24 weeks. Currently, it’s required for all abortions, even those very early in pregnancy when it may not be medically necessary.
Akey is hoping more people will push to change the law. It doesn’t offer space for decisions like the one she and her family are trying to make.
This story is a production of New England News Collaborative. It was originally published by New Hampshire Public Radio.