Mighty Small NICU Baby Fights for Her Life With All Her Might

Becoming parents was a bumpy road for Vanessa and Jaison Freeman. After four rounds of intrauterine insemination (IUI), they felt blessed to be expecting a little girl. However, at the beginning of the third trimester, they learned that Vanessa’s high-risk pregnancy grew increasingly riskier.

“At the beginning of my pregnancy, I was pregnant with twins. Unfortunately, the middle of my first trimester, we lost one of our babies, which already made my pregnancy high-risk,” Vanessa says. “But my age and being that I’m a black woman made my pregnancy even higher risk.”

This meant the obstetrics-gynecology (OB-GYN) and maternal fetal medicine (MFM) teams at Lehigh Valley Health Network (LVHN), part of Jefferson Health, were working together to keep a close eye on Vanessa throughout her pregnancy, conducting more frequent, in-depth scans. It’s because of this close monitoring that what could have ended in heartbreak ultimately resulted in a very happy ending for the Freeman family.

At 28 weeks pregnant, Vanessa and Jaison went to MFM for a 3D scan, excited to see their baby. But that excitement soon turned into fear when the team made an unexpected discovery. The Freemans’ baby was tracking significantly smaller than she should for her gestational age.

“Hearing that news was really scary and felt surreal. It was not what we were expecting that day and it really changed the course of things for the foreseeable future,” Vanessa says. 

Because of a placenta abruption – a serious pregnancy complication where the placenta separates from the uterine wall before the baby is born – their daughter wasn’t receiving the nutrients she needed, and as a result was nearly four weeks behind on her growth. The severity of this complication put both Vanessa’s health and her daughter’s life at risk. Vanessa would have to spend the rest of her pregnancy at Lehigh Valley Hospital–Cedar Crest for monitoring.

“Before heading to the hospital, we stopped home to grab some stuff as we weren’t sure what to expect. And I remember walking into the nursery where we just put the crib together the weekend before, and looking at that crib and saying, ‘I’m going to bring this baby home,’” Vanessa says.

When the Freemans got to the hospital, maternal fetal medicine specialist William Scorza, MD, with LVPG Maternal Fetal Medicine, helped calm their nerves.

“We were so lucky to have Dr. Scorza. He was so kind and really spent time explaining what was happening to us. He brought a textbook in during one of our conversations to show us the science behind what was going on and drew us pictures. He really took the time to answer the questions my husband and I had, and we are so grateful he took the time to be so attentive,” Vanessa says.

After arriving at the hospital, Vanessa was given a steroid shot to help with her daughter’s lung development. It was then just a matter of waiting while closely monitoring Vanessa and the baby. “We were playing a game of how much time can we give her before the decision has to be made to deliver,” Vanessa says.

A week and a day later, things took a turn for the worst, and the Freemans were told it was time to deliver.

“The real concern is that it seemed like the fetal condition was deteriorating rapidly and the greatest fear is stillbirth,” Dr. Scorza says. “We can treat prematurity and we can treat respiratory distress and premature babies, but you can’t treat stillbirth. So it was really expediting the delivery and getting that baby to the neonatal intensive care unit (NICU) where they could provide the care the baby needed.”

“When this news came, it was a Friday and Dr. Scorza was getting ready to rotate out, and he showed me a text message he sent to his wife that said, ‘I’m going to be late. I’m staying to deliver this baby.’ And that just meant so much to us and goes to shows the type of person and clinician he is,” Vanessa says.

On Aug. 4, 2023, at 5:19 p.m., Rylee Morgan Freeman was born, weighing just 2 pounds. She was rushed a few floors up to Lehigh Valley Reilly Children’s Hospital’s Level IV NICU. 

“When Rylee was born, it was a relief for me and super exciting as well,” Jaison says. “I just remember peeking over that curtain and Dr. Scorza held her up a little bit, and the first thing I said was, ‘Oh, she’s got a full head of hair,’ and it was just beautiful. And then hearing her cry was also a beautiful moment for me, too, because of how small she was and the fact that she was born early, we didn’t know if she was going to be able to do that. She was everything that I would’ve ever imagined.”

Thankfully, Rylee had a pretty “straightforward” stay in the NICU, reaching the most important milestones – from needing continuous positive airway pressure (CPAP) breathing support, then transitioning to a cannula and then room air, to coming out of the isolette, to eating without the feeding tube.

“Looking at Rylee in the isolette created a lot of emotion because you want to touch her, you want to be able to hold her, you want to be able to take care of her, but you have these literal walls around her that are preventing you from being able to care for her in the way that you’d want to,” Jaison says.

“It was really hard coming home from the hospital without her. We went to the hospital every day and then found ourselves watching her on the NICU’s LVHN BabyCam whenever we weren’t with her,” Vanessa says. “But knowing we had such dedicated, professional, kind people watching over her every day made a really hard situation a lot more manageable. We are so grateful for the NICU staff that cared for Rylee as if she was their own.”

On Oct. 9, 2023, after spending 66 days in the NICU and weighing just over 5 pounds, Rylee was cleared to go home.

“Bringing Rylee home was exciting and nerve-wracking. There were no more monitors, or nurses or doctors. It was just us caring for her and reading her cues, and that was a big transition,” Vanessa says. “But it felt so good for her to be ours and to be able to feed her and change her and hold her whenever we wanted, without having to ask permission.”

Today, Rylee – whose name was chosen as a nod to “Reilly” Children’s Hospital and “Riley” Road behind the maternal fetal medicine’s office where Vanessa received her high-risk pregnancy care – is now 2 years old and full of life. Small, but mighty, Rylee is strong, never stops moving, is fearless, loves making her family laugh and continues to exemplify her strength every day. 

“When I’m holding Rylee to sleep, the piece of her journey that comes back to me is that I didn’t get to do this for a long time after she was born. It’s a loss that I can’t get back,” Vanessa says. “So on her birthday this year, I told my husband I wanted to do bedtime and just have a moment of holding her because I couldn’t two years ago when we got to see her for the first time. And just holding her felt extra special.”

The Freemans are grateful for the care they received through Lehigh Valley Reilly Children’s Hospital, and the MFM team. 

“I would like to say to Dr. Scorza and the NICU team, thank you. That doesn’t feel like enough to express the gratitude for the care, consideration, kindness they’ve given us, and continue to give us and the other families in the NICU,” Vanessa says. “To them it’s work, but to us it’s our life, our story forever, and I hope they know they leave an imprint on the folks that come through.”

It's this gratitude that inspired Vanessa to give back, which she does volunteering for Today Is A Good Day – a program designed specifically for families in the NICU, providing them with the support they truly need – helping host their monthly support group, Navigating the NICU. 

“You can’t quite get what’s it’s like to have a baby in the NICU unless you’re in it. And when I do the Navigating the NICU sessions and share that my daughter was here two years ago and is now thriving, you see it brings other families hope in a moment that’s so uncertain and can feel so hopeless. And if I can do that for other families then I consider it a good day,” Vanessa says.