Before becoming a mother, if someone had told Charmaine she would give birth to a premature baby who would remain in the neonatal intensive care unit (NICU) for nearly a year – and then come home with a ventilator and a G-tube – she would have told them she wasn’t strong enough to handle it.
Today, Charmaine knows she’s capable of handling anything for her son, Noa, and her firstborn, Gigi. “Whatever it takes,” she said. “I show up, I stay positive, and I don’t focus on the ‘what-ifs.’”
She also knows she can count on family, friends and the remarkable team at Phoenix Children’s who help her care for her children. “There are amazing people at Phoenix Children’s. They show up every day for the kids.”
Growing a family
In early 2020, at the height of the COVID-19 pandemic, Charmaine and her husband, Francesco, were settling into their new home in Phoenix with their daughter, Gigi, and looking forward to growing their family.
In November, Charmaine learned she was pregnant with Noa. Although her pregnancy with Gigi had no complications, she’d had a miscarriage eight months earlier. As happy as she was to be pregnant again, the loss weighed heavily on her heart, and she was afraid of losing another baby. “There was so much uncertainty and fear during that time,” she said.
When Charmaine’s OB/GYN recommended she get monthly ultrasounds because of her age – 39 – some of the worry was lifted. “Knowing I could see my baby every month helped quash my fears,” she said.
Emergency C-section
At the six-month checkup, Francesco was able to join Charmaine in the appointment. He hadn’t been allowed to accompany her to prior appointments due to COVID-19 restrictions, so Charmaine couldn’t wait for him to see the image of their growing son.
Midway through the appointment, the ultrasound technician left the room to speak with a doctor. Charmaine became concerned. “I could tell something was wrong,” she said.
Charmaine’s intuition was right. Noa hadn’t grown in a month because of a complication with the umbilical cord. He was being deprived of the nutrients he needed to develop. The doctor explained that Noa had to be removed by C-section as soon as possible. “It was a Friday, and the doctor said Noa might not make it to Monday if he didn’t come out,” she said.
Four hours later, Charmaine was wheeled into the operating room where Noa was delivered at 28 weeks.
“He was so tiny, just one and a half pounds. But he was there,” she said. “When your baby is in the NICU, there’s this juxtaposition of feeling so happy that he’s alive but so sad that he’s in that position.”
Struggling to breathe
In the first weeks after delivery, Noa wore a nasal cannula, a small tube connected to a ventilator and inserted into both nostrils to support his breathing. Charmaine and Francesco hoped he would be home by Aug. 31, his due date, but Noa’s undeveloped lungs struggled from bronchopulmonary dysplasia, a serious condition that mostly affects babies born more than 10 weeks prematurely. Noa’s care team recommended he be transferred to Phoenix Children’s to have a procedure done to help him breathe better and give him a better chance at going home sooner.
Charmaine and Francesco debated the risks of surgery on their tiny baby. “My mind went to the worst things that could happen,” she said. “But Francesco is more logical. He pointed out that Noa would be in the best hospital in the world and under the care of the best doctors. So, we chose to go with the tracheostomy.”
In October 2021, Noa was transferred to Phoenix Children’s to undergo a tracheostomy. Under general anesthesia, an incision in Noa’s windpipe was made and a tube, connected to a ventilator, was inserted to help him breathe better.
“In the long term, a tracheostomy is much better for their neurodevelopment,” said Navin Bhopal, MD, neonatal specialist at Phoenix Children’s, and part of Noa’s NICU team. “A lot of times, babies who need a ventilator for a long period of time, like Noa, may need it for a couple years. Their lungs need time to heal and grow, and that’s a long process. A tracheostomy offers a better chance they can go home sooner and frees up the baby to play and interact with their environment.”
Noa also received a feeding tube, or G-tube, inserted through the abdominal wall into his stomach for feeding. “Most babies who get the tracheostomy also get the G-tube,” said Dr. Bhopal. “When their breathing is compromised, it’s hard to be able to feed them safely by mouth.”
Life in the NICU
As the weeks and months passed, Noa’s care team at Phoenix Children’s became a second family to Charmaine and Francesco. In the NICU, Noa had his first photo shoot and experienced his first Christmas and New Year. Although he had some setbacks, Noa continued to grow and thrive, charming the NICU team with his infectious smile and darling personality.
“They are an amazing family,” said Dr. Bhopal. “Once Noa was able to be comfortable, he became so interactive. Everyone enjoyed spending time with him, seeing him develop, and making such great progress.”
Charmaine appreciated the NICU team’s expertise and commitment to caring for the babies and their families. “They were so sweet and wonderful in everything they did,” said Charmaine. “Still, I really didn’t want to be there. I just wanted Noa to be at home.”
She recalled a day in the NICU when one of the nurses flung open her arms to hug Charmaine. “She must have seen something in my eyes. I just fell into her arms and started crying hysterically. She told me she had been doing this work for 40 years and that she had seen a lot of babies, and that Noa was going to be amazing.”
Going home, at last
In May 2022, nearly one year after delivery, Noa was able to go home. But leaving the NICU was not so simple. “It’s a big transition period for parents,” said Dr. Bhopal. “It requires 24/7 care and a lot of love and dedication to take care of a baby like Noa in a home environment.”
Charmaine and Francesco took rigorous training classes to learn CPR, how to care for Noa’s tracheostomy and troubleshoot the medical equipment that supports his breathing and feeding. Noa’s room was set up to run like a mini hospital with nurses seven days a week and help a couple of nights a week.
“We’ve gotten into a rhythm now,” said Charmaine, grateful to have both of her children at home. Noa still has some challenges to overcome, but he continues to grow and develop every day. He’s gained some ability to breathe on his own for short periods, and he’s transitioned to formula through his G-tube. “And he’s a talker!” said Charmaine. She loves when he says, “Hey, Mama.”
The doctors tell Charmaine and Francesco it could be a couple years or a couple months before Noa is ready to completely breathe on his own. However long it takes is not important to Noa’s family. They’re just happy to be together – at home.