Large chest mass poses big challenges: Freddy’s NICU story

For years, even before they got married, Ray and Liza Soto knew they wanted a child.

They tried, but to no avail.

Then, at last, the Sotos, now married for five years, learned they were going to have a baby.

A boy they would name Freddy.

Alas, at around the end of Liza’s first trimester following a routine checkup, her local doctor delivered devastating news.

“We found a mass in your baby’s chest,” he said.

“That shook us to our core,” Ray recalls.

Follow-up visits revealed the mass had grown.

“They were telling us we could abort him – basically, that he had no chance,” Ray says.

The Sotos would have none of that.

Refusing to give up on their unborn child, they prayed for a miracle and decided to accept their newborn, whatever his condition or future challenges, as a precious gift.

“There’s nothing I can do for you guys,” one doctor told the Sotos when Liza was five months pregnant.

Liza thought to herself:

That’s all I want my son to have – a life.

I don’t care if he has other mental or medical issues. If he’s breathing and alive and can smile and know who we are, that’s what matters.

Prepared for the worst

Liza’s water broke on Aug. 7, 2021, and Freddy arrived prematurely at 33 weeks the following day. Because his belly was so large, doctors had to perform a C-section. 

Freddy’s clinical team were prepared for the worst. 

He came out with a dark-blue color and wasn’t crying. Doctors drained a lot of fluid from him and took him to the neonatal intensive care unit (NICU) once he was stable.

Freddy was put on a ventilator and IVs. He was moving a bit but not looking good.

A couple of hours later, his doctor recommend he be transported to CHOC for a higher level of care.

Freddy arrives at CHOC’s NICU

A few minutes later, a CHOC helicopter whisked Freddy to its hospital in Orange.

Pediatric surgeon Dr. Maryam Gholizadeh has been at CHOC for 19 years. She knew right away Freddy would be a challenging case.

“When he came into the NICU, he was extremely sick,” she recalls. “He was on a ventilator on a very high setting, and it was difficult to move him to get imaging done. We needed to get a CT angiogram (an imaging test that looks at the arteries that supply blood to the chest) to figure out his vascular anatomy.”

A multi-disciplinary team mobilized to treat Freddy, including neonatologist Dr. Amir Ashrafi, pediatric cardiologist Dr. Sanjay Sinha, cardiothoracic surgeon Dr. Brian Palafox, neonatologist Dr. Robert Hillyard, pediatric pulmonologist Dr. Sunil Kamath, neonatologist Dr. Ziyad Alhassen, and neonatologist Dr. Daryoush Bassiri.

Bronchopulmonary sequestration (BPS)

A NICU team managed to manually pump Freddy’s lungs so he could get the CT coronary angiogram.

Doctors detected a tear-shaped mass in the 4-lb. newborn’s lung. It was benign, but its large size was the problem.

They diagnosed Freddy with bronchopulmonary sequestration, also known as BPS or pulmonary sequestration. The rare birth defect occurs when an abnormal mass of nonfunctioning lung tissue forms during prenatal development. BPSs can lead to breathing problems, infection and life-threatening complications like heart failure.

The mass inside tiny Freddy was pushing his heart and left lung to the right side of his body.

Liza and Ray with newborn Freddy at the NICU at CHOC Hospital in Orange

“Because of his situation,” Dr. Gholizadeh says, “there was not a whole lot of room for error. This case was extremely complex.

“When Freddy came in, it really required all these specialists to put our heads together and take the tumor out in the safest way possible. Freddy absolutely had no reserves. Everything had to be done perfectly without any blood loss. Any complication would have just tipped him over.”

 A week after Freddy was born, doctors successfully removed the mass from his chest.

“It came out nicely and easily without any bleeding,” Dr. Gholizadeh says.

Praise all around for CHOC doctors and nurses

Freddy remained in the NICU for four months before he was discharged. He underwent a tracheostomy and had a feeding tube deliver nutrition directly into his stomach.

Liza recalls hearing Freddy cry for the first time after surgery.

“We waited so long to hear his voice,” she says. “When I heard him cry I was so happy. It was an amazing experience.”

The Sotos say CHOC doctors patiently and kindly explained what was happening from the start.

And they praised Freddy’s nursing team.

Liza, Ray with Freddy later on during their four-month stay at the NICU at CHOC Hospital in Orange, with Freddy growing and developing daily

“They’re amazing,” Liza says. “They’re tough. They see this kind of thing day in and day out. They made it easier for us.”

Freddy’s nursing team included Noreen Popat, Jamie Rayburn, Nikki Haun, Cassandra Simon and Kirsten Galloway, as well as Karin Mitchell, Freddy’s speech language pathologist.

“I loved taking care of both Freddy and his family,” Kirsten says. “Coming to work and seeing Freddy and his family always brought such a smile to my face, and watching his progression to finally getting discharged was amazing to witness. He was such a strong little man with an incredible support system.”

‘Enjoying every moment’ of Freddy’s progress

Dr. Gholizadeh says Freddy is progressing well as he continues to grow.

Ray says damaged tissue in his right lung continues to heal and that things have been moving in the right direction. 

“He makes noises and knows who his parents are,” Ray says. 

Freddy likes to touch a mirror in his crib and grasp hanging toys. 

“He moves his head and looks around the room at everything,” Liza says. 

She adds: “It’s been a really long journey, and I owe everything to the doctors and nurses at CHOC.”

Ray, who used to work at a hospital in environmental services, now is Freddy’s full-time home care provider. Liza, a former bus driver, is a stay-at-home mom.

“Freddy is growing and getting stronger day after day,” Ray says. “We’re very grateful and enjoying every moment.”

CHOC Hospital was named one of the nation’s best children’s hospitals by U.S. News & World Report in its 2020-21 Best Children’s Hospitals rankings and ranked in the neonatology specialty.