Paterson Family Experiences Life in the NICU Not Once, But Twice

Joanela Diaz of Paterson, New Jersey, struggled to have children. In April 2016, when she was five months pregnant, she gave birth to a stillborn child. It was devastating, but she was determined to be a mom. Just two months later, she was pregnant again.  

It was a difficult pregnancy—emotionally, as she struggled with the loss of her child, and physically. Her blood pressure was high, and it couldn’t be stabilized. She saw her obstetrician every three days so her medical team could monitor what was happening with her health and the baby’s and to try to prevent preterm labor. 

But an early birth couldn’t be avoided. At 24 weeks and five days, Joanella’s daughter, Victoria, was born. She weighed less than a liter of soda. “She was very fragile, very small,” Joanella says.

Victoria was immediately taken to the Neonatal Intensive Care Unit at Joseph M. Sanzari Children’s Hospital at Hackensack University Medical Center for specialty care.

A Rough Go of It

Premature babies go through many different hurdles in the first days and weeks after birth, says Sabrina Malik, M.D., one of the neonatologists who cared for Victoria in the NICU. And Victoria faced many difficult challenges.

She developed bronchopulmonary dysplasia (BPD), a chronic lung condition that is not uncommon in premature babies who receive oxygen support through a ventilator. BPD is a condition that improves as the baby grows, but can lead to life-threatening complications, such as pulmonary hypertension, which Victoria developed. “The mortality rate from pulmonary hypertension associated with BPD is very high in the first year of life,” Dr. Malik says. “I remember having very difficult conversations with Victoria’s mom about that.”

Victoria also developed retinopathy of prematurity (ROP), a condition that babies born under 30 weeks or with a very low birth weight can develop, Dr. Malik says. ROP can lead to vision loss or blindness. To treat Victoria’s ROP, she had laser eye surgery at four months old.

Slowly, Victoria gained weight and she grew stronger. After six months in the NICU, she went home weighing 10 pounds. “When we left the ICU, we thought that our troubles would be over,” Joanella says.

Familiar Territory

However, Joanela soon found herself back at the NICU—not with Victoria, who continued to thrive under the care of various specialists, but with a new baby. Venus was born in August 2018. Like her big sister, she was born prematurely, but she had a couple extra weeks on her sister.

Venus’s condition at birth was better than her older sister’s. “She was relatively, overall, a little bit more stable than her sister,” says Donna Lee, M.D., a pediatric pulmonologist who treated both Victoria and Venus.

Venus was treated in the NICU’s Small Baby Unit, a specialized unit specifically designed to meet the sensory, developmental and physical needs that are unique to premature infants born under 30 weeks.

Returning to the NICU was an overwhelming experience for Joanela. “When I went back to the NICU, it took a lot for me to continue walking in because when I was walking through the doors towards the NICU—there’s a special smell—and it just came back,” she says. “Everything came back, and I was like ‘Oh my God. I’m going through this again. Am I strong enough to go through this process again?’”

Just as they had with Victoria, the NICU team was there to support Joanela and her family while Venus was growing and gaining strength in the hospital. “They are amazing,” Joanela says of the NICU team. “They became my family. They took care of my children when I couldn’t. There is no price—nothing I can say—that’s ever going to repay them for what they did there.”

Unique but Healthy Girls

Both girls, who are 4 and 2 years old, received post-hospitalization care from a number of specialists, including Dr. Lee, who provided supportive care to help the girls’ lungs outgrow their prematurity-induced lung disease. “Overall,” Dr. Lee says, “the girls seem to be quite on-target.”

Their mom confirms they’re both doing well. Besides seeing Dr. Lee, they have also seen cardiologists, developmental pediatricians, speech therapists and physical therapists. Because of the ROP and eye surgery, Victoria saw an eye specialist, and she gets additional support at school now. “It was definitely a challenging experience, but thankfully, they’re OK. There are no developmental delays. They’re just normal toddlers driving Mommy nuts,” Joanela laughs.

While they’re perfectly normal in most ways, their mother knows just how unique they are and tells them about what happened in the NICU, showing them photos of their time there and telling them about the people who took care of them. “They need to know what their story is,” she says. “It is a miracle. They are miracles.”

Next Steps & Resources:

            Meet our sources: Donna Lee, M.D. and Sabrina Malik, M.D. To make an appointment with a Hackensack Meridian Children’s Health doctor near you, call 800-822-8905 or visit our website.

            Learn more about neonatal intensive care for the littlest patients at Hackensack Meridian Health

            5 things to know about premature birth

            A day in the life of a NICU nurse

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