Karla Perez and her partner wanted a baby. But at 22 weeks pregnant, she suffered a brain bleed that left her brain dead.
So her family and the health-care team at Methodist Health System in Nebraska faced a monumentally difficult task: how to keep the 22-year-old alive so that the baby could develop enough to actually be delivered.
It was new territory for those involved: 1999 was the last time a brain-dead woman in the United States delivered a baby, as reported in medical literature.
Doctors managed to keep Perez alive for 54 days, and on April 4, doctors delivered a 2 pounds, 12.6 ounces baby boy named Angel via Caesarean section. Perez died two days later.
“At 22 weeks, the baby can’t survive outside the uterus or outside of the womb, so if we were going to try and give baby Angel any chance of survival, we would have to try and prolong Karla’s pregnancy for as long as possible,” Todd Lovgren, a doctor at Methodist Women’s Hospital Perinatal Center, said at a Wednesday news conference. “Karla’s family asked us to try and prolong Karla’s life and try to maintain her as long as possible for Angel’s benefit.”
Perez suffered from juvenile rheumatoid arthritis and knew from a young age that pregnancy would be difficult, according to the hospital.
Often women with rheumatoid arthritis are counseled to not get pregnant, not because of the disease itself, but because they would have to get off the medications that control the disease and the pain it inflicts, said Perez’s OB-GYN, Tifany Somer-Shely.
Perez had given birth to a healthy girl three years ago, and doctors didn’t expect any major problems this time around.
“Pregnancy was so important to her and her partner that she chose to go off all these medicines while trying,” Somer-Shely said Wednesday. “They were very excited to have this baby.”
She experienced chronic pain during her pregnancy that got to be so bad that walking had been difficult for her, Somer-Shely said. “I’ve found her to be a total non-complainer. She was always a special patient to me.”
On Feb. 8, Perez took a nap, hoping it would help her headache. But she woke up and felt no better and then fell unconscious at home, according to the hospital. She was taken to the hospital and hours later, the catastrophic intracranial hemorrhage was so bad that she was declared brain dead.
It’s unclear why Perez had the hemorrhage, said Andrew Robertson, a medical director at Methodist Women’s Hospital Perinatal Center, adding that pregnant women are at an increased risk to have them. The bleeding in Perez’s case lasted for an hour or more.
“There was enough damage done that it wasn’t going to be fixed,” Robertson said.
No one at the hospital had ever faced a case like this before. According to the literature search they conducted, there have only been 33 documented cases since 1982 of brain-dead women kept alive until they delivered babies (other cases have cropped up in news reports but weren’t documented in medical literature).
During one of the first meetings with doctors from different disciplines, the general consensus was “I’ve never done this before,” Lovgren said. “We go to the literature, you go to your textbooks, and you don’t find how to take care of these patients. So it’s really up to the knowledge and understanding of the physicians in each of those specialties.”
Significant neurological injury can lead to deregulation of major body systems, so various specialists provided counsel on how to keep Perez alive and stable.
Doctors had a minimum goal of keeping Perez going until she hit 24 weeks pregnant, while aiming for 32 weeks. Her condition destablized when she hit 30 weeks, and then doctors performed a C-section.
“We managed to get close to eight weeks, which is fairly impressive under the circumstances,” Robertson said.
Angel has been stable since his birth, and has been in the neonatal intensive care unit for about a month. He remains on a nasal device and eats via a feeding tube. Doctors expect he will need to remain in the unit for another month.
“He wouldn’t have done this well if we weren’t able to prolong Karla’s pregnancy to the point where the rest of his organs had time to mature and develop, specifically the lungs,” said Brady Kerr, of the hospital’s NICU. “Right now we have hope and reason to be cautiously optimistic because we don’t have any signs of complications.”
Nurses and doctors rallied around Perez and her family, who maintained a constant presence at her bedside. At times, more than 100 people were caring for her, Robertson said.
“You can’t be a part of this team without being affected emotionally,” Somey-Shely said. “Her family’s resiliency throughout this whole thing, with her grim prognosis and the reality of her situation — they never stopped hoping, and they never stopped praying.”
Perez’s legacy will live on in many ways; she donated her liver, kidneys and heart.