Michelle and Amadou Mbodji, of Bergen, NY, were thrilled to be expecting their third child.
Their sons, Amadou Jr. and Ibrahim, were looking forward to a little sister. But when baby Amina was only eight days old, something went terribly wrong in her tiny body. She was rushed to the hospital, where her family and doctors spent two full weeks unsure of her day-to-day survival.
When Everything that Can Go Wrong, Does Go Wrong
Michelle’s pregnancy and delivery were healthy, and baby Amina went home. At first, she was doing well, but soon Michelle noticed that Amina had stopped eating, wasn’t sleeping much, and was breathing through her mouth more often. Worse, her skin was starting to turn gray. Frightened, Michelle called her father, Brad McVicker, who is a nurse. He rushed to their house and took one look at his little granddaughter.
“Quick, get her to the hospital right now.”
Michelle and Amadou took their newborn to nearby Unity Hospital. During the car ride, Amina grew quieter and more still. Despite the emergency room being full, the staff saw what state Amina was in and took her back and put her on oxygen immediately.
Michelle’s anxiety only increased when she realized that if they had waited any longer, Amina would have died before they even got to the hospital.
After she was intubated at Unity, the doctors quickly concluded that Amina needed the specialty care only available at Golisano Children’s Hospital (GCH). Unity called the transport team at GCH to come get her immediately. Katie Palumbo, MD, a pediatric critical-care physician, doesn’t usually join the transport team, but she made an exception due to Amina’s condition; the baby’s blood pressure and oxygen levels were so low the Unity doctors could barely detect them.
“When I saw her, I wondered: ‘Is she even alive?’” said Palumbo.
Once she was at GCH, Palumbo determined that Amina’s liver, kidneys, and lungs weren’t functioning. Palumbo remained at her bedside all night, making minute-by-minute adjustments to medications and settings on the ventilator just to keep her breathing. No one—her family or her doctors—expected her to survive the night.
The next morning, Jake Deines, MD, a pediatric critical-care physician, joined Amina’s clinical team. They noticed Amina’s belly began to swell and grow firm. She had blood in her stool, which was a possible sign of necrotizing enterocolitis: dead tissue in the intestine. The only option to treat it would be a risky surgical procedure.
“We had this unbelievably ill child that also had an acute surgical problem,” said Deines. “It was a strain for us to believe that she would survive if she had the surgery. Do we do something that might more quickly result in her death but could have a slim chance of saving her life, or do we not pursue the aggressive option and let her pass?”
Amina was far too frail to move to an operating room, so the OR came to her. Pediatric surgeon Derek Wakeman, MD, was called in to perform the bedside bowel surgery. His initial assessment was that in addition to dead intestinal tissue, Amina had abdominal compartment syndrome; her belly was so full of liquid that it was putting pressure on her other organs, and she couldn’t breathe properly. Wakeman believed that surgery would not only remove the bad tissue, but would help her breathe better as well.
“She was 100 percent going to die without that surgery. She was probably going to die even with the operation, but we had to try,” said Wakeman.
As he performed the surgery, Wakeman was relieved to find that only a portion of her intestines, just 15 centimeters, needed to be removed. He drained the excess fluid and Amina endured three additional procedures over the next few weeks. Lastly, the team placed a gastronomy tube (g-tube) in her belly for feedings because she still needed ventilator support through her mouth.
While the surgery was a success, Amina continued to be sick with other ailments. Her kidneys were failing, and she needed dialysis. Continuous renal replacement therapy (CCRT) requires a machine to provide dialysis, and most machines were made with adult patients in mind. “It’s stressful to put infants on those machines,” said Palumbo.
Fortunately, GCH had recently acquired the new-to-market CarpediemTM machine, specifically designed for infants. GCH is just the second program in the United States to get one of these machines, and Amina is the first infant in New York State to have used it. She would remain on this machine for a full two weeks. To keep her from the fussing and movement typical of infants, Amina had to be sedated to keep all the machines and lines securely attached to her little body.
The Turning Point from Treating to Healing
While Amina was still connected to machines (the CarpediemTM and a ventilator), there came a turning point when doctors and her family were able to stop wondering if she’d survive the night and started to see those tiny improvements that meant she was on her way to recovery.
“She came off dialysis slowly, and things started to get better,” said Michelle.
For Deines, there were multiple turning points that increased her odds of survival.
“She survived the surgery, so there’s a chance she’ll survive the rest,” he said. “She tolerated the dialysis machine, which was a great sign. We weren’t escalating her ventilator settings anymore. She kept beating the odds, again and again.”
Shortly after being able to stop dialysis, she was also taken off the ventilator. “That was the BIG moment,” said Michelle, “She was breathing on her own and awake.”
Once Amina was off the machines, the focus of her care switched from treating critical illness to getting her healthy enough to go home. She was still being fed through a g-tube, and doctors wanted her to gain a little weight before going home. With support from her doctors and the powerful love of her family, after a total of six weeks, Amina could leave the hospital.
Home Again, Home Again
Amina was discharged with her g-tube, a list of medications, and an oxygen nasal cannula to use at nighttime, but she was home. “You know that feeling, you want to cry because you’re smiling so much?” said Michelle.
She was ecstatic to have Amina home with her big brothers. It was a little competitive because everyone wanted snuggle time with her. Amadou Jr. and Ibrahim were fantastic big brothers, helping care for their sister and showering her with love.
Her progress continued. After a few months at home, Amina was able to stop using oxygen at night, and she had an appointment to remove her g-tube. A year later, she has transitioned from having having a bleak prognosis to thriving.
“She’s doing great! She eats everything now; she’s a chunky, happy baby. She’s getting close to walking,” said Michelle.
Although it was one of the most difficult times of her life, Michelle thinks back with fondness for all the doctors and nurses involved in Amina’s care. “They did not stop fighting for her, even when they thought she wasn’t going to make it. She’s here because of them.”