Pregnancy With Lupus Is Risky. Would She Be Able to Carry Her Baby to Term?

Fatimah Shepherd knew she was not supposed to get pregnant — not now, while her illness was acting up, and maybe never.

Lupus, an autoimmune disease, was gnawing away at her kidneys, and doctors had warned her that pregnancy could tip her into full-blown kidney failure.

But in December 2023, there it was, a positive pregnancy test: two bold lines on the test strip, bright pink and indisputable.

“I almost passed out,” said Ms. Shepherd, 41, a New York City Fire Department dispatcher who lives in Brooklyn and had always wanted a child. “All I was thinking was, ‘What am I going to do?’”

For much of the 20th century, doctors instructed patients with lupus — a disease that strikes women during their prime childbearing years and that disproportionately affects Black, Hispanic and Asian women — to avoid pregnancy at any cost. The miscarriage rate was high, and pregnancy appeared to aggravate the disease.

That advice has changed in recent decades, as treatments have improved. But pregnancy can still be a precarious enterprise, and women with lupus that attacks the kidneys are advised to become pregnant during periods when their disease is stable and has been in remission for six months.

Ms. Shepherd’s disease was far from stable. Her kidney function was so compromised that she had started the process of getting on a waiting list for a donor kidney. A nervous Ms. Shepherd called her nephrologist, Dr. Mala Sachdeva, a professor of medicine with Northwell Health in Great Neck, N.Y.

But Ms. Shepherd recalled: “When I told her my news, she said, ‘Wow! Congratulations!’ And the way she said it, I could finally breathe.”

The doctor told her that pregnancy posed serious health risks, but that she had cared for other women who had done well and given birth to healthy babies. She told Ms. Shepherd, “We’re going to get through this.”

“It was a thing she said over and over again, throughout my pregnancy, every time I saw her: ‘We’re going to get through this,’” Ms. Shepherd recalled.

‘A lot to wrap your head around’

The team of doctors managing Ms. Shepherd’s care at Northwell Health — all women, most of them mothers themselves — met with Ms. Shepherd early in the pregnancy. They described in detail the risks that pregnancy entailed for both her and the fetus, and urged her to think carefully about whether to proceed.

The stress of pregnancy would almost certainly push her into kidney failure, and it could be permanent. Her high blood pressure could escalate out of control, which could restrict the baby’s growth. And she was at high risk for developing pre-eclampsia, a life-threatening condition that might force her doctors to deliver the baby prematurely.

“If her blood had clotting issues, if she had a seizure, then we would be delivering her to save her life,” said Dr. Hima Tam Tam, director of obstetrical medicine at North Shore University Hospital and Long Island Jewish Medical Center

A premature baby also would face risks. “There’s a risk of cerebral palsy; there’s a risk of blindness; there’s a risk the baby might have difficulty with ambulation,” said Dr. Dawnette Lewis, the director of the Northwell Center for Maternal Health.

There was also a risk the baby would not make it at all.

The doctors had several conversations with Ms. Shepherd because they wanted to give her time to process the information. “It’s a lot to wrap your head around,” Dr. Tam Tam said.

But they told her they would support any decision she made.

“And she definitely knew what she wanted,” Dr. Tam Tam said. “I knew that from the minute I saw her. I just wanted to make sure that she knew how long this journey was going to be.”

A room with a view

In January, Ms. Shepherd went on a planned vacation to the Bahamas. But a month later, when she came in for a checkup, the doctors were alarmed. Her potassium levels had spiked, which could cause cardiac arrest. Her blood acid levels were also high, putting the fetus at risk. She needed to start dialysis immediately.

Most kidney failure patients undergo dialysis three times a week. But pregnant women are recommended to have four-hour sessions, six days a week, in order to minimize fluid fluctuations that can restrict blood flow to the fetus. The fetal heart rate is monitored before, during and after dialysis.

Dialysis is exhausting, and Ms. Shepherd would be commuting from Brooklyn to Long Island for her care. All the doctors agreed: The safest thing at that point was to admit her to the hospital.

“We all kind of felt we wanted to just pack her up and take her home with us,” Dr. Tam Tam said.

But Ms. Shepherd had just come for a doctor’s visit; she didn’t even have a change of clothes with her. Still, she trusted the team. “It was their suggestion, but it was my choice,” she said. “And I said, OK, I’m going to do it. If you’re saying this is going to better for my child, I’ll stay here.”

She would remain at Katz Women’s Hospital at North Shore University Hospital in Manhasset for the next five months.

Ms. Shepherd was given a room with a view: on a corner, with large windows looking out over the parking lot on one side, where she could see the hospital staff’s comings and goings, and a small waterfall nestled in a grove of trees on the other.

She decided to make the best of it. She did her hair every morning and got dressed — no hospital gowns for her — and she took up painting. She had dialysis in the afternoons, and spent the mornings walking the halls of the hospital to maintain good circulation in her legs. Darnell Wilson, the baby’s father, came every Friday and spent the weekend with her; family members visited, and her colleagues from the Fire Department set up a rotating schedule of visits, so she was never alone.

When Ms. Shepherd was in her sixth month of pregnancy, she had a gender reveal party in her hospital room. She was having a boy, and she painted her nails blue in celebration. In May, she hired a professional photographer to do a pregnancy photo shoot of her.

“I kept myself busy,” she said. “I would take nice walks around the hospital and socialize with everybody. And I prayed every night and throughout the day. I had to keep a positive mind-set.”

Her doctors were checking her labs daily, constantly making adjustments in her medications and monitoring for any signs of pre-eclampsia. It was tricky, because lupus flare-ups during pregnancy can look like the condition, and when blood pressure spikes, it is not always clear whether it is from hypertension or pre-eclampsia. “You don’t want to deliver someone early because of a wrong diagnosis,” Dr. Lewis said.

“We were scared,” Dr. Tam Tam said, then corrected herself: “We were terrified.”

Ms. Shepherd’s official due date was Aug. 3, but her medical team planned to induce her on July 8, if she made it that far. But at 3:30 a.m. on July 5, Ms. Shepherd went into spontaneous labor, and Baby Oakari was delivered a couple of hours later via cesarean section.

Oakari was a healthy little boy who weighed five pounds at birth. Ms. Shepherd had carried him just short of 36 weeks. It was an incredible outcome: Most women with lupus whose disease inflames the kidneys develop complications and are forced to deliver much earlier, by about 33 weeks.

“She really beat the odds,” Dr. Lewis said.

But she wasn’t quite out of the woods yet.

The fourth trimester

As soon as Ms. Shepherd and her partner, Mr. Wilson, got their hands on an infant car seat, they took Oakari home. Mr. Wilson was on a few weeks of paternity leave, and Ms. Shepherd continued her dialysis treatments, now three times a week instead of six.

But in late August, Ms. Shepherd started having chest pain and shortness of breath. She went to the nearest emergency room, where she was diagnosed with cardiomyopathy, a disease of the heart muscle that develops in rare cases after childbirth, during the period known as the fourth trimester, which is fraught with risk for new mothers.

Ms. Shepherd was hospitalized for a few days, and then referred to Dr. Evelina Grayver, director of women’s heart health at Katz Women’s Hospital for a follow-up. But when she arrived on Long Island for her appointment in early October, Oakari in tow, she was breathing rapidly and gasping for air.

“My nurse, Paula, ran into my office and said, ‘There’s a new patient, and she doesn’t look good — she’s huffing and puffing,’” Dr. Grayver said.

Oakari had started crying, so Dr. Grayver scooped him up and held him while she examined Ms. Shepherd, who was struggling to breathe, and gave her oxygen.

“She told me she thought she just needed to go to dialysis, but I told her, ‘I think you’re going into heart failure,’” Dr. Grayver said.

Dr. Grayver called the transport services to take Ms. Shepherd to the emergency department, while Ms. Shepherd tried to reach her partner. But Mr. Wilson was on a job several hours away, and Ms. Shepherd’s sister could not get to the hospital right away.

“I was worried she would have to go on a ventilator, but the only thing she was worried about was the baby,” Dr. Grayver said.

Dr. Grayver went down to the emergency department, still holding Oakari. He was fussy, so the emergency nurses warmed a bottle for him, and Dr. Grayver sat herself in a corner and fed the infant.

“Fatimah was in such distress, and she saw the baby took to me, and said, ‘You’re so good with him,’” Dr. Grayver recalled. “So I said, ‘Do you want him to stay with me?’”

And that’s what they did. Ms. Shepherd got started on a nitroglycerin drip, and while a bed was prepared for her in the cardiac intensive care unit, she gave permission for Dr. Grayver to watch the baby until a family member could pick him up.

Dr. Grayver kept Oakari with her all afternoon, and her nurse practitioner took him whenever a patient came in. Dr. Grayver was preparing to take him home with her when Ms. Shepherd’s sister came to pick him up. “Just between us, I was secretly quite disappointed,” Dr. Grayver said. “He is such a cutie.”

Ms. Shepherd was fortunate. About one-third of patients with postpartum cardiomyopathy get worse, about one-third stay the same and about one-third improve. Ms. Shepherd improved. “I am beyond happy,” Dr. Grayver said.

Oakari is almost 2 now. He is walking — well, when he’s not running — and loves soccer and picture books and other children.

But Ms. Shepherd’s kidney function did not recover after the delivery. For a while, she hoped that a live donor would come forth to give her a kidney. Organs from living donors last longer, and the waiting time for a kidney can be up to five years.

But on Sunday, at 6:40 a.m., Ms. Shepherd got a call from North Shore University Hospital: A kidney from a deceased donor was available, and it was a good match for her. Could she get to the hospital in an hour?

She did, and by Sunday afternoon, she had a new healthy kidney. It was the ultimate happy ending.

Now she is looking forward to a taking Oakari to swim lessons, and to the many other things she could not do while on dialysis. Most of all, she said, “I want to get my energy back. and play with my son like a normal mom.”