For most parents, giving birth is a whirlwind experience typically punctuated by the joy of an arrival of a new child.
For Joan and Ike Tahou, the birth of their daughter Liliana (“Lily”) quickly devolved into a nightmare. A few hours after she was delivered via emergency C-section at 36 weeks, Lily was losing blood, her organs were failing, and her brain was deprived of oxygen. Joan and her family faced an endless stream of doctors, nurses, and other caregivers working around the clock to save her.
Joan, who works on the clinical side of URMC as a sleep technologist, had to watch in agony as it unfolded. Accustomed to being part of a care team, she could only sit back while her daughter’s life hung in the balance. At one point, caregivers asked whether the family wanted to baptize or hold Lily since her odds of survival were slim.
“It was so traumatic --- it felt like an out-of-body experience.” Joan said. “Like I was watching an episode of ‘Grey’s Anatomy’.”
During this long night, Joan did what she could; she cut out a piece of a blanket and wrote “stay strong Lily” on it and put it next to her newborn daughter.
“I wanted her to have something that smelled like me, since I couldn’t hold her,” she said.
“Is this Real?”
A day earlier, everything was calm. Joan had a routine ultrasound visit, and Lily’s heart strip-monitoring was normal. Later that evening, however, Joan stopped feeling Lily’s movements, and shortly after midnight, she left nothing to chance and went to the hospital as a precautionary measure.
Shortly after arriving at the hospital, URMC obstetrician Sarah Betstadt, MD, conducted another heart strip-monitoring test, which revealed a sinusoidal wave pattern, meaning that instead of seeing a normal rate of activity and variability (implicated by wiggles in the pattern), they saw a smoothly oscillating line.
“This usually indicates there’s significant blood loss in some way,” said Rita Dadiz, DO, associate professor and clinician in the Division of Neonatology. “It means the fetus is in trouble and you need to get the child out as soon as possible.”
For Joan, this finding confirmed her worst suspicions. “I almost went to bed instead of the hospital, so it shows the importance of trusting your maternal instincts!” she said.
Lily was subsequently born engaged in a struggle. She was suffering from pulmonary hypertension of the newborn, in which the body essentially prevents itself from effectively getting the oxygen it needs. Lily needed CPR and because her heart rate was low, she was intubated since she couldn’t breathe on her own. In addition, she presented as very pale in appearance, indicating that she was anemic.
At first, caregivers believed Lily’s condition was due to a placental abruption, in which the placenta prematurely separates before birth, cutting off blood flow and oxygen to the baby. Her potential diagnosis, however, was secondary to the urgency of the moment.
“We just knew that we had a very pale child in front of us who wasn’t breathing effectively,” said Dadiz.
While caregivers worked to stabilize Lily, labwork and tests started to provide a fuller picture. Lily’s hemoglobin levels were at less than 3 g/dL, and her hematocrit–which measures the proportion of red blood cells in your body–was at 8 percent. By contrast, an average hematocrit is 50 percent. Lily’s anemia was severe, and her low blood levels were limiting oxygen delivery to support her major organs, which were failing.
At this point, Joan and her husband had been informed that Lily wasn’t doing well. Given her background, Joan understood all of the information being relayed to her and the seriousness of the situation.
“At one point I saw that her oxygen level was at 7 percent, and I turned to the nurse and asked ‘is this real?’” she said.
The care team had difficult conversations about the long-term dangers to Lily’s neurological health even if she survived, given the lack of oxygen to the brain.
“The family was full-speed ahead about trying to save her,” said Dadiz.
Regular mechanical ventilation was failing to help with Lily’s oxygen levels and remove carbon dioxide so was she put on high-frequency oscillatory ventilation, which provides breaths up to 900 times a minute to get the oxygen she needs while getting rid of the carbon dioxide.
“We had to control her breathing so she could do the other things important to survive,” said Dadiz.
Early analysis of Lily’s condition revealed that her placenta actually hadn’t separated, as initially suspected. The care team took a blood sample from Joan to see if Lily’s blood had transferred to her, as a newborn’s red blood cells look different from the mother’s with a specific test. These samples revealed that Lily had suffered from fetal-maternal hemorrhage, in which the fetus’s blood transfers to the mom at or before birth.
Specifically, 85 percent of Lily’s blood had transferred to Joan, and only 15 percent of Lily’s own blood was circulating through her body.
“It explains why she needed so much support and attention from us,” said Dadiz. “Out of 1,000 births, you may see very significant blood loss due to fetal-maternal hemorrhage one time.”
High-frequency oscillatory ventilation helped provide initial stabilization for Lily’s breathing, but Dadiz’s team was faced with dual concerns: the lack of oxygen flow to her brain and her severe anemia due to the massive blood loss.
The care team moved to cool Lily’s body temperature to approximately 92 degrees Fahrenheit, a method that can reduce the negative impact of the lack of oxygen on her brain. In addition, the team moved ahead with a rapid plan to address her anemia by conducting several partial-volume exchange transfusions with donated blood. Lily would get three of these transfusions–dense with red-blood cells–-to get her hematocrit levels up while removing her depleted blood.
“We couldn’t restore her blood in one regular transfusion because the heart would have to be able to accommodate a significant volume, and it already wasn’t functioning well,” said Dadiz.
Caregivers conducted the exchange transfusions during the course of 24 hours at her bedside in the NICU. It was a risky procedure due to the amount of blood flowing in and out of the body, but it was the best shot at helping Lily recover.
“That night, the doctors and nurses never stopped working, and they never gave up on her,” said Joan.
As Lily’s first day of life turned into the second, caregivers completed their third transfusion, and she started to stabilize. After 38 hours awake and constant uncertainty over Lily’s fate, Joan could finally feel some measure of relief.
“The next day at rounds they said ‘she made it through the night; she’s not out of the woods yet, but she’s not in an emergent situation anymore,’” she said.
Hitting the Milestones
Now that Lily had started on a gradual path to recovery, doctors pivoted to the long-term health of her brain function. Justin Rosati, MD, was tasked with monitoring her neurological development.
“I knew about Lily early on and wasn’t sure if she was going to live through those early days,” he said. “After she had just turned the corner, I talked to the family and told them she was at less risk of dying, but we were not seeing good signs of her brain activity and were worried.”
At this point, Lily was still on the ventilator and couldn’t be brought down to the imaging room for an MRI. The only outcome Rosati could promise was uncertainty due to her Hypoxic Ischemic Encephalopathy (HIE), a condition that develops due to lack of oxygen in the brain.
“It’s really difficult because parents want to know the prognosis, but we’ve seen a hundred babies with similar stories, and it’s really hard to predict how they’ll do; a lot of it is watchful waiting,” he said.
One by one, however, positive signs began to emerge. Lily recovered enough by day five to have an MRI.
“The imaging gave us a picture that she wasn’t anywhere near as damaged as she could’ve been,” said Joan. Soon, Lily was removed from the ventilator, then she was off morphine and was able to be taken out of emergency care. She started feeding shortly afterward.
Lily was ultimately discharged on April 17, two days before her original due date. The next path in her journey were developmental milestones; if she could reach them, it would indicate that she had avoided long-term neurological damage.
Now approaching a year old, Lily is meeting those marks, eating solid foods, standing up, and crawling. “She’s doing remarkably well,” said Rosati. “The longer we get away from the incident and the better she does, the better the long-term outlook looks.”
For Lily and her family, the feeling is now joy. Joy that their prayers were answered, and the nightmare that was the first days of her life has faded. Thinking back, Joan reflects on what one of the doctors said to her several days after Lily had her transfusions and was showing increasing signs of full recovery:
“That’s what Lily does—she heals herself.”