An Illinois mum says it’s ‘wonderful’ to have her daughter home with her after the 18-month-old spent more than 500 days in hospital, first in the unit of neonatal intensive care, then, after his 1st birthday, in pediatric intensive care unit.
Autumn was born premature at 23 weeks in March 2021. Weighing just 1.1 pounds, she was considered a micro premature who had various complications due to prematurity, including bronchopulmonary dysplasia (BPD), a type of chronic lung disease. Doctors at the time weren’t sure she would make it, giving the little girl a 50% chance of survival.
“When a patient is about to give birth at 23 weeks, we know that [the baby’s] survival is about 50% … and so Autumn had a 50 to 50 chance of survival in her first delivery,” Dr. Megan Lagoski, a neonatologist at Lurie Children’s Hospital in Chicago, told ‘Good Morning America.’ .
Lagoski, also the director of Illinois’ only bronchopulmonary dysplasia program at Lurie Children’s, would eventually see and treat Autumn after she was transferred to the hospital at 5 months old.
“She had dangerous drops in her oxygen level, even to the point where her heartbeat would also become low and they were worried she might die,” Lagoski explained.
“His heart was strained by all the work it takes to pump blood to the lungs and to pick up oxygen and bring it back and pump it out to the rest of the body, which is called pulmonary hypertension, and that made her even sicker,” the doctor added.
Autumn’s mother, Tyler Robinson, recalled that it was “very scary” to move Autumn to another hospital, but it was the one she felt was necessary. “It was [a] a very risky transfer, but I knew we had to go ahead and get him to a specialist for more eyes,” Robinson said.
At Lurie Children’s, Autumn was treated with different medications, underwent surgery to have a breathing tube inserted, and received oxygen therapy, among other treatments.
“She actually needed sedation or additional medication to help her stay calm while her lungs slowly healed from this period of illness,” Lagoski said. “But once we got her well supported on the respiratory system, we were able to pull through and we were able to help her start doing normal baby things and having more meaningful interactions with her mom. .”
According to Robinson, Autumn spent 524 days in the hospital, a long journey filled with unknowns and unimaginable hardships. Robinson visited her daughter every day and made it a priority to speak to Autumn.
“I spoke to her and I said, ‘Fall, it’s okay, if you’re ready to go. … But if you’re not ready to go, and you want to keep fighting this good fight, mom will keep going. to fight this good fight with you and we’re going to keep doing it together no matter what,” Robinson said. “I just wanna pray for my baby, talk to my baby, sing for my baby.”
Through it all, Robinson made sure to mark every milestone and celebrate every holiday and birthday, in part to lift the spirits of others in the NICU as well.
“I decorated for everything. I pulled out candy for the nurses and…you know, we’re in this bad spot and we feel [like] we’ll never get over it, but a little candy here and there will bring someone a little happiness,” she said.
Robinson said her direct experience in the NICU with her daughter opened her eyes to the trauma parents, caregivers and hospital staff face on a daily basis.
“September is NICU Awareness Month and that’s something I need to highlight, [the need to have] more advisors. Talk to parents about this PTSD [and] such a traumatic childbirth,” Robinson said.
“I mean, I’m still going through this,” she continued, adding that she suffered from post-traumatic stress disorder herself.
“I still have the screams in my head from the parents. They can hide it but it’s real here and nobody [knows] unless they live there. And it’s not just the parents, these nurses have to see these doctors, everyone. It’s a different world.”
Robinson added that the NICU “is also a wonderful place.”
“You see miracles, my baby is a miracle…but also let’s not stray from the pain that we parents see and feel from other parents,” she said.
For now, as Robinson settles in at home with her toddler, she is focused on providing her daughter with the full-time care she still needs, with the help of live-in nurses. Slowly, Autumn seems to be making more and more progress, learning to get used to being on a household fan, working on sitting up and playing with her toys.
“My daughter Autumn is a happy, happy baby,” Robinson said. “She’s stubborn but sweet as can be, adorable.”
When she’s older, Robinson wants her daughter to know that his love for her is endless.
“Mom had great support, all around: family, friends, hospital support. But I did everything for her, no matter what I did,” Robinson said. “I sacrificed a lot for her but I would do it again. …I would do it again for her, everything for her, because I love her.”