Fatimah Shepherd had been adamant about avoiding pregnancy — especially at this moment, with her health declining, and perhaps forever. Her lupus, an autoimmune condition, was damaging her kidneys, and her healthcare providers cautioned that carrying a baby could lead to total kidney failure.
Then, in December 2023, she took a pregnancy test and was shocked to see two bright pink lines. “I almost passed out,” said Ms. Shepherd, 41, a Fire Department dispatcher from Brooklyn who had always dreamed of being a mother. “All I could think was, ‘What am I going to do?’”
For much of the previous century, women with lupus were advised to steer clear of pregnancy altogether. The condition often affected women at crucial childbearing ages and was especially prevalent among Black, Hispanic, and Asian women. The miscarriage rates were concerning, and pregnancy often exacerbated the disease.
However, medical guidance has evolved over the years as treatments have improved. Still, women battling kidney-related lupus must consider becoming pregnant only when their health is stable and in remission for at least six months.
At that point, Ms. Shepherd’s condition was not stable. She had begun the process of getting on the transplant list for a kidney. Feeling anxious, she reached out to her nephrologist, Dr. Mala Sachdeva, a professor at Northwell Health.
When Ms. Shepherd broke the news, Dr. Sachdeva responded with unexpected joy: “Wow! Congratulations!” Her enthusiasm brought Ms. Shepherd a wave of relief.
Dr. Sachdeva acknowledged the health risks of pregnancy but shared that she had successfully managed other women who had delivered healthy babies. “We’re going to get through this,” she assured Ms. Shepherd.
That reassurance became a theme throughout Ms. Shepherd’s pregnancy, repeated by the doctor every time they met: “We’re going to get through this.”
‘A lot to wrap your head around’
Early in the pregnancy, a team of female doctors from Northwell Health — many of whom were mothers themselves — met with Ms. Shepherd to discuss the complexities and risks associated with her pregnancy.
They explained how the stress could potentially push her into kidney failure, with blood pressure becoming unmanageable and the risk of pre-eclampsia looming, which could necessitate early delivery.
“If there were clotting issues or if she had a seizure, we’d have to deliver to save her life,” said Dr. Hima Tam Tam, who heads obstetrical medicine at two hospitals.
A premature birth would also bring its own set of risks. “There’s the possibility of cerebral palsy, blindness, or difficulty walking,” added Dr. Dawnette Lewis from the Northwell Center for Maternal Health. The prospect that the baby might not survive was also present.
The doctors had numerous discussions with Ms. Shepherd, intentionally allowing her time to absorb all the information. “It’s a lot to wrap your head around,” Dr. Tam Tam noted.
Yet, they reassured her that they would support any decision she made. “I could tell from the start that she was determined,” Dr. Tam Tam said. “I just wanted her to be fully aware of the road ahead.”
A room with a view
In January, Ms. Shepherd took a planned trip to the Bahamas. But upon her return and during a checkup a month later, the doctors became alarmed by her elevated potassium and blood acid levels, which posed severe risks to both her and the fetus. Immediate dialysis was required.
Typically, patients with kidney failure undergo three dialysis sessions a week. However, pregnant patients are recommended to have longer sessions more frequently—to minimize risks associated with fluid fluctuations affecting fetal blood flow. The baby’s heart rate is closely monitored before, during, and after treatment.
The entire process is draining, and commuting from Brooklyn to Long Island for treatment was challenging. So, her medical team agreed that the safest option was for her to be hospitalized.
“We all felt a strong desire to take care of her ourselves,” Dr. Tam Tam admitted.
Despite arriving for just a checkup without a change of clothes, Ms. Shepherd trusted her healthcare team. “It was their idea, but I had to agree. If this would benefit my child, I’d stay,” she said. And so, she did, remaining at Katz Women’s Hospital for the next five months.
She was assigned a corner room with large windows providing a view of the bustling parking lot on one side and a tranquil waterfall on the other.
Embracing her situation, she made an effort each day to look her best, opting out of hospital gowns. She took up painting and participated in daily walks around the hospital to promote circulation in her legs. Her partner, Darnell Wilson, visited weekly, and her family, as well as colleagues from the Fire Department, maintained a schedule to keep her company.
During her sixth month, Ms. Shepherd hosted a gender reveal party in her hospital room, celebrating with blue-painted nails for the son she was expecting. By May, she arranged for a professional photographer to capture her pregnancy moments.
“I kept myself occupied,” she shared. “I’d take nice walks and chat with everyone, and I prayed regularly. Staying positive was essential.”
Her doctors monitored her health closely, adjusting medications daily to detect signs of pre-eclampsia. It was a delicate balance since lupus flare-ups can mimic the condition, making it difficult to discern if high blood pressure stemmed from hypertension or pre-eclampsia. “We didn’t want to make a premature delivery error,” Dr. Lewis remarked.
“We were scared,” Dr. Tam Tam admitted, correcting herself, “We were terrified.”
Although Ms. Shepherd’s due date was August 3, her team intended to induce labor on July 8 if all went according to plan. Yet, at 3:30 a.m. on July 5, she unexpectedly went into labor, and shortly after, delivered a healthy baby boy named Oakari via C-section.
Oakari weighed five pounds, and remarkably, Ms. Shepherd carried him nearly the full 36 weeks — a fantastic outcome given the complications many lupus patients face that often lead to delivery at around 33 weeks.
“She really defied the odds,” Dr. Lewis noted.
But challenges were not over for Ms. Shepherd just yet.
The fourth trimester
As soon as they acquired an infant car seat, Ms. Shepherd and Mr. Wilson took Oakari home. With Mr. Wilson on paternity leave, Ms. Shepherd continued with her dialysis treatments, now reduced to three times a week.
However, in late August, she experienced chest pain and breathlessness. An emergency room visit resulted in a diagnosis of cardiomyopathy, a heart muscle condition that can emerge in rare cases after childbirth, particularly during the sensitive fourth trimester.
She spent several days in the hospital and was referred to Dr. Evelina Grayver, who specializes in women’s heart health, for follow-up. But when she arrived, Oakari in her arms, she was visibly struggling to breathe.
“My nurse rushed in, saying, ‘There’s a new patient, and she doesn’t look good,’” Dr. Grayver recounted.
As Oakari began to cry, Dr. Grayver held him while examining Ms. Shepherd and providing her with oxygen.
“Fatimah thought she just needed dialysis, but I suspected heart failure,” Dr. Grayver reflected.
She called for transport services to take Ms. Shepherd to the emergency department as Ms. Shepherd sought to reach Mr. Wilson, who was too far away to assist.
“I was worried she’d need a ventilator, but her only concern was the baby,” Dr. Grayver said.
Dr. Grayver joined Ms. Shepherd in the emergency department, still holding Oakari. After warming a bottle for the baby, she found a corner where she could feed him while attending to Ms. Shepherd.
“Fatimah was clearly in distress, but she noticed that the baby was comfortable with me, and remarked, ‘You’re so good with him,’” Dr. Grayver shared. “I offered to keep him with me until they could arrange for a family member to pick him up.”
And so they did. While Ms. Shepherd was treated, Dr. Grayver kept Oakari entertained. “I was honestly a bit disappointed when a family member arrived to take him home,” she admitted. “He was such a cutie.”
Ms. Shepherd was fortunate; her condition improved, reflecting the varied outcomes seen in postpartum cardiomyopathy. “I am beyond happy,” Dr. Grayver expressed.
Now nearly 2 years old, Oakari is walking — well, running — and enjoys playing soccer and reading.
Yet, Ms. Shepherd’s kidney function did not return after the delivery. Initially hopeful for a living kidney donor, the long wait for a deceased donor could last up to five years.
Then, on April 19 at 6:40 a.m., she received a call from the hospital: a kidney was available and a good match. Could she arrive within an hour?
She made it, and by that afternoon, she received a new, healthy kidney. It was the perfect conclusion to her journey.
Now, she looks forward to taking Oakari swimming and to engaging in activities she missed while on dialysis. More than anything, she said, “I want to regain my energy and play with my son like a typical mom.”
