Desperate for heart surgery for their baby, a family feels the effects of pediatric hospital shortages

CNN
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Even before their daughter was born in June, Aaron and Helen Chavez knew she would need heart surgery. Doctors expected her to have an operation around 6 months of age.

When it became apparent in September that it would have to happen much sooner than expected, the Chavezes said, they endured an agonizing monthlong wait for a bed to open at their local children’s hospital so baby MJ could have the procedure she needed.

“They said, ‘Well, we would love to get her in as soon as possible. However, right now, we don’t have beds,’ ” Aaron said.

Space for children in hospitals is at a premium across the country. Data reported to the US government shows that as of Friday, more than three-quarters of pediatric hospital beds and 80% of intensive care beds for kids are full. That’s up from an average of about two-thirds full over the past two years.

Federal data shows that the strain on hospital beds for kids began in August and September, which is right around the start of the school year in many areas.

Hospitals are seeing higher than normal numbers of sick infants and children due to a particularly early and severe season for respiratory infections in kids, including respiratory syncytial virus, or RSV, and influenza.

As of Friday, Golisano Children’s Hospital in Rochester, New York, the facility that treated the Chavezes’ daughter, was over capacity. Federal data shows that it has been consistently more full than the national average over the past few months. Golisano went from having 85% of its beds occupied in August to over 100% now.

Like many other hospitals across the country, Golisano has seen a sharp increase in children who are severely ill with RSV. Dr. Tim Stevens, the chief clinical officer, said 35% of the hospital’s current patients – excluding those in the neonatal intensive care unit – have RSV.

A lack of available beds means patients are sometimes held in the emergency department to wait for a bed to open so they can be admitted, Stevens says.

It may also mean children who have chronic conditions and need procedures or hospital care, but whose conditions are stable, may have to wait.

MJ was born in June with a ventricular septal birth defect – a hole between the pumping chambers of her heart. It’s a relatively common problem affecting about 1 in every 240 infants in the United States, according to the US Centers for Disease Control and Prevention.

Doctors could see the defect on prenatal ultrasounds, but because MJ was never in the right position to get a good image, they weren’t sure of its size.

If they’re small enough, these holes usually close on their own soon after birth. But the hole in MJ’s heart was not small.

It caused the oxygen-rich blood coming from her lungs to mix with oxygen-poor blood returning from the rest of her body. Too much blood got squeezed back into her tiny lungs with each heartbeat, straining her respiratory system.

Everything exhausted her, even nursing or drinking from a bottle. “She would stop eating before she was full and before she got the calories that she needed,” Aaron said.

Typically, babies will take a bottle for 15 to 20 minutes at a time, but MJ would doze off after six or seven minutes, her mother recalls.

They didn’t worry, Helen says, because they were trying hard not to be anxious newbies. “All those websites, they say sometimes you just have a sleepy baby, and it’s OK,” she said.

Other signs that MJ might be hungry could be explained away, too. They mistook her constant fussing for colic. Her scalp started to get dry and flaky, and they thought it might be a common skin condition called cradle cap.

As first-time parents, the Chavezes didn’t realize at first that MJ wasn’t eating enough. Doctors didn’t immediately catch it, either. MJ got three checkups during her first month, one within a few days of coming home from the hospital, the other at two weeks and another at one month.

It’s normal for babies to lose weight after birth, especially if Mom got IV fluids during labor and delivery. They typically return to their birth weights by 2 to 3 weeks of age. And at first, MJ did regain weight, climbing back to her birth weight by 2 weeks old.

But babies with heart conditions like hers can have faster-than-normal metabolisms, and it was between weeks two and four that her parents say the feeding issues really began to cause problems.

“We were frustrated and we were scared, because she looked like she was losing weight, not gaining weight. She was very thin for a baby,” Aaron said.

The doctors had advised them to count the number of wet and dirty diapers she was having each day as a way to judge whether she was eating enough. Her parents didn’t know it was not as much as she should have been.

“One day, I was holding her, sitting in our recliner. I looked down at her and I was like, ‘this baby looks puny. Like, she does not look like she feels good,’ ” Helen said.

She called their pediatrician, who saw them the same day. The pediatrician immediately notified their cardiologist, who arranged for a feeding tube to help MJ get more nutrition.

Helen says they had been told MJ would need surgery to repair the hole in her heart around 6 months of age.

“Once the feeding issues started, though, that I think that we all kind of realized that, OK, she’s probably not going to hit that six-month mark,” she says.

MJ got the feeding tube when she was around 6 weeks old, in August. Her doctors started talking about moving the operation up but advised her parents that she would need to gain some weight first.

The feeding tube helped for a time, but by the time MJ was 3 months old, her condition had deteriorated.

“Every breath came with a grunt,” Aaron said. “She was fairly regularly sweating, no matter the ambient temperature in the room or whether we were holding her or not.”

Every time MJ drew a breath, the skin around her collarbone would suck in and her abdomen would pull under ribcage, a symptom known as a retraction. Retractions are a sign that someone is working very hard to breathe.

“It looked like her chest was almost scooping under her lungs with each breath. The retractions were getting really bad. It was around that point that they told us, ‘Hey, yeah, this is accelerating faster. We’re going to need to get her in for surgery soon,’ ” Aaron said.

Helen said their cardiologist first discussed getting MJ’s case reviewed – a key step her doctors needed to prepare for her surgery – on September 14.

“He said, ‘it might take a couple of weeks to get her in because we’ve been really slammed with emergencies, but we’ll get her in,’ ” Helen said.

Doctors put MJ on medications called diuretics to help drain excess fluid off her lungs and ease her breathing – but then, at the end of September, she caught a cold.

It wasn’t a bad cold, and Helen Chavez, a pharmacist, thinks that if the baby had been healthy, she probably could have fought it off at home with no problems. But Helen was worried, so she took she MJ to the ER.

The doctors checked her, determined she was stable and sent the family home with supportive care.

At a follow-up doctor’s visit, Helen said, she asked again, “Where are we on the surgery?”

Helen said the cardiologist said they had not been able to review MJ’s case.

“And they said, ‘Well, we would love to get her in as soon as possible. However, right now we don’t have beds,’ ” Aaron said.

“Throughout that time, she kept getting worse. More symptoms would pop up in terms of the breathing would get worse, the retractions would get worse, that kind of a thing. Like there was more and more and more piling up,” Aaron said.

Helen said she understood that MJ’s condition was still stable, but she was worried it wouldn’t stay that way.

“I was like, ‘I’m worried she’s going to crash and that’s how we’re going to get in for this surgery is, it’s going to take this kid crashing and burning before we can get her in,’ ” Helen told the doctor, who reassured her.

” ‘No, no, no, she is not going to get to that point before we get her in,’ ” she says they were told.

On October 10, things took a turn.

The baby slept in a bassinet beside her parents’ bed. Helen nudged Aaron awake around midnight to look at their daughter, and his first thought was to reassure his wife that yes, the doctors had told them that her breathing was going to look bad. But then he rolled over and peered at MJ, who was asleep.

“That was the moment that I was wide awake,” Aaron said, and he was terrified.

“It was the raggedness of her breathing and the noise. Every breath, there was a strange sound coming from her. It sounded like she was fighting for, like, struggling for every breath.”

They raced to the hospital.

“We were sitting in the ER, and every other kid in that pediatric ER was hacking, coughing, sneezing,” Helen said. “Clearly, respiratory viruses hit Rochester early and very hard.”

Helen said it was clear by the end of that visit that medications had done all they could do and that MJ would continue to get worse without the operation.

“Our understanding is, it took an extra ER visit to push the timeline,” Helen said.

That visit prompted an emergency appointment with the cardiologist.

“That’s where they were like, ‘OK, we’ve got her in for conference,’ ” Helen said.

The hospital says it can’t comment on the specifics of MJ’s case.

“The Golisano Children’s Hospital cardiology and cardiac surgery teams review the status of all pediatric patients who need heart surgery twice a week,” the hospital said in a statement to CNN. “We cannot comment on a specific case, but once surgery becomes necessary, it is scheduled as quickly as needed based on the medical condition of the child. The current high census of pediatric inpatients at our hospital has not affected our ability to schedule non-elective pediatric cardiac surgeries in a timely way.”

Stevens, the chief clinical officer, says those decisions are made on a case-by-case basis.

“Each of those are reviewed by our medical and surgical team to determine whether or not they’re time-sensitive,” he said. “Things that are time-sensitive or certainly urgent or emergent, they get done.”

When it becomes clear that a child needs to be admitted, Stevens said, hospital officials find ways to open beds, and they try to do it so it doesn’t exhaust their nurses.

Stevens says he’s hopeful the situation will improve, that infections will die down, “because this is not sustainable.”

Aaron Chavez agrees that there was no delay once MJ’s case got the necessary review – but says that review itself kept getting put off.

“We were essentially told that her case review was being delayed because they simply didn’t have the beds,” he said.

The surgical team reviewed MJ’s case on October 13, and she had surgery 12 days later, according to Aaron.

Aaron says the family has no complaints about the quality of care their daughter received, and they’re grateful to the entire team of doctors, nurses and other staff who treated their daughter.

“Once push came to shove, they definitely got her in, but the last four weeks were really, really harrowing,” Helen said. “It was just kind of hard to watch your baby have trouble breathing and know that there’s not a whole lot you can do.”

On the morning of October 25, the Chavezes brought MJ to the hospital, where doctors walked them through the operation. A piece of synthetic material would be sewn into her heart to patch the hole. Over time, the material would allow her own cells to grow on it and cover the defect.

The procedure could take as long as 12 hours. But it went faster than anticipated, and MJ was finished in half that time. The surgeon came out to tell them the good news: The operation had been a success.

“Her surgeon said that it was the biggest hole that he has seen in 2022 and one of the biggest he has ever seen,” Aaron said.

The Chavezes then went to the pediatric intensive care unit to wait for MJ. As soon as they saw her, they could see she was better.

Before the surgery, her skin had been pale and mottled; after, she was a healthy pink.

“Just in that short amount of time, her skin had that pinkness and redness in places that you expect like the nose, and her fingers were proper pink,” he said. “That color you expect out of a healthy baby. It was really nice to see that.”

She was in the hospital for six days, and her recovery amazed her care team.

“She kind of crushed recovery milestones like it was her job,” Aaron said.

Now back home, MJ is playing catch-up with the developmental milestones she missed while she was sick. Her muscles are weak, she can’t sit up or roll over yet, and she may never switch back from the feeding tube to a bottle. A team of occupational and physical therapists comes over to help. They expect she will eventually make up for the time she missed, but it will take some work.

Still, Aaron says the surgery has had an amazing effect.

Before her operation, MJ was very uncomfortable and always tired.

“The baby that I have now, that returned from surgery, is constantly smiling at us. She’s almost laughed three different times in the last couple of days, right? She’s so close to a laugh. She seems like an entirely different baby,” Aaron said.

The Chavezes were nervous about sharing their story, but in the end, they decided it was important to shed light on the effects of the ongoing hospital bed shortage.

“Everybody we have told about the bed shortage, that we have told about the nurses and the staff and the doctors telling us how burnt-out and frustrated they are and how tired they are, everybody’s surprised,” Aaron said.

“Everybody’s shocked. Everybody thinks that this is over. The pandemic is over. Our health care system’s back to normal. ‘What are you talking about? What shortages?’ “

In the end, they felt powerless. What could they – two exhausted working parents with a sick infant – do to solve a national crisis?

After all, after nearly three years of a viral pandemic, doesn’t everyone already know what to do? Stay home if you’re sick. Put on a mask in public places while viral illnesses are running rampant. Get vaccinated.

“I don’t know how I’m supposed to help tell 330 million people, ‘Hey, you should care about each other,’ ” Aaron says.

Their story is one reminder of why all those simple but effective measures are important.

“In the end, we believe the information getting out there is better than not,” Aaron said. “Hopefully, it will help push those in power to do better.”