Ava Romano of Becton is all smiles during the girls softball game between Becton and Lyndhurst at McKenzie Field in East Rutherford, NJ on Thursday, April 27, 2023.Mile Djordjiovski | For NJ Advance Media
By Jake Aferiat | NJ Advance Media for NJ.com
Even after all their daughter Ava had just agonizingly endured in the previous hours and days — a collapse while home alone, a rush to the hospital, a pulmonary embolism diagnosis, being on the verge of death — Joe and Michele Romano heard something back in January that stopped them in their tracks.
Ava was finally, mercifully on the mend, recovering after hours of vascular repair surgery and a thrombectomy to remove her blood clots, when a doctor came up to them and gave them some welcome, but humbling news.
“We didn’t know we had the sickest child until they said, ‘As of today, Ava is no longer the sickest child in this PICU [Pediatric ICU],’” Michele told NJ.com. “My husband looked at him and said, ‘She was the sickest?’ You don’t process what happened right away, and then you were just like, ‘Oh, my God. Yeah, she was the sickest kid.’”
That included, Joe recalled, several children on the floor who had Do Not Resuscitate orders signed as well.
That Ava was even sicker than any of those children would never be evident today, five months after a task as mundane as getting up to let her dogs out on Jan. 23, led to catastrophe.
Prior to that day, she’d been sick, but nothing indicating the nightmare to come.
On that day, she was hooked up to a heart monitor, in part due to a history of palpitations dating back to when Ava, now a sophomore at Becton, was in eighth grade.
“I wasn’t feeling myself and I just knew it,” Ava told NJ.com. “But we never knew it was going to be anything as bad as it was.”
The darkest moments
Arguably the worst call of Joe and Michele Romano’s life came at around 11 a.m.
On the other end of the phone was daughter Ava, screaming ‘I just passed out, I can’t breathe.’
Neither Michele, who works at Paramus High School, nor Joe, who works in sewage and drain cleaning, were home. But even if they were, it might not have mattered.
The only thing that mattered was getting Ava to Hackensack University Medical Center immediately.
Once there, doctors determined Ava had a bilateral pulmonary embolism. Given the nature of the emergency, they quickly did what they could to lessen the effects and hooked her up to an ECMO — or Extracorporeal Membrane Oxygenation — machine, which is a heart and lung bypass device that takes the blood out of one side of the body, runs it through a machine and pumps the blood back into the body.
The team at Hackensack worked rapidly and inserted ECMO cannulas (specialized tubes), but Hackensack, as a smaller hospital, didn’t have a full-time pediatric ECMO unit.
At that point, doctors reached out to Drs. Jason Fisher and Arun Chopra, the surgical and medical directors of the NYU Pediatric ECMO program, respectively.
After a 15-minute screaming ambulance ride over the George Washington Bridge, to Hackensack – yes, the doctors went to Ava – Fisher and Chopra arrived and conferred with the professionals at Hackensack about the next course of action.
But during those 15 minutes, Fisher is confident of one thing:
“She would have died in the Hackensack emergency room for sure, had they not emergently and very quickly got those cannulas in. That much is very clear,” Fisher told NJ.com.
ECMO, though, is only a temporary fix. And even if she were stable enough to be transported, there was still the matter of the blood clots and the ensuing bleeding from the ECMO cannulas.
After her arrival at Hackensack, she became unstable, in part, because of an ECMO cannula coming loose. The machine keeping her alive was not working.
So what then?
“The ECMO machine wasn’t functioning and now you’re relying on more traditional means of CPR and medicines and other things to keep her heart pumping, which are not nearly as reliable as the ECMO machine,” Fisher said. “Then, it really was a matter of minutes they had to respond and get her new cannulas that would function.”
The whole sequence, best as Joe recalled, took maybe a minute. But even going a minute without blood and oxygen to the heart and brain could be fatal.
“They had no idea what to expect, and if she would wake up – and for the first day it was incredibly touch and go,” Joe said.
It was the most excruciating minute of his life, watching his youngest daughter lying there on a table, a minute that few will ever be able to comprehend.
“I wouldn’t wish it on my worst enemy. I hope nobody ever has to go through that. There’s only a few people who’ve been through what I’ve been through,” Joe said. “Unfortunately, people who have lost a child are the only people who can understand. I can’t even describe it. You’re helpless. There’s nothing you can do. And you don’t know what to expect. I just can’t describe it. It’s horrifying.”
Ava eventually stabilized and was well enough to be taken to NYU.
But by that point, agonizing thoughts had already entered Michele mind. How could they not?
“It got to the point where I actually was just waiting for them to come out and say ‘Sorry, there was nothing else we could do for her,’” Michele said. “And it got to the point where I was thinking: ‘How do I best honor her? What do I lay her out in? What would she want?’”
Those thoughts eventually subsided and Ava further stabilized enough to be transported to Hassenfeld Children’s Hospital at NYU almost immediately thereafter.
And to think — just roughly 18 or so hours prior, all Ava Romano wanted to do was get up to let her dogs out.
Saving Ava
Hours turned into days and weeks, and all Ava could do was stare out the window of her hospital room in the pediatric intensive care unit at NYU.
Beyond the pulmonary embolism, Ava also dealt with massive bleeding from the emergent nature of the ECMO insertion, which at one point dislodged from her femoral artery and damaged it severely.
For weeks, she tried to recover from both the removal of the pulmonary embolism and an hours-long and successful vascular repair surgery.
One of the keys to those procedures’ successes was the somewhat paradoxical fact that she was hooked up to ECMO itself.
“ECMO was very helpful because it helps to give the heart and the lungs a break during the procedure,” said pediatric interventional radiologist Frederic J. Bertino, who removed the blood clots. “So it certainly bought us some time, where we could be more deliberate with what we were trying to do.”
Bertino performed a thrombectomy, where he essentially siphons out the blood clot through an incision in the neck.
“It really was bad because it put her heart in a stressful situation. The lungs are pretty good organs at filtering out some blood clots, because that’s kind of why they’re hooked up to the rest of our venous system in the way they are,” Bertino said. “But if the burden is particularly large enough to make the heart work extra hard, that’s where we run into issues.”
They were able to perform the thrombectomy with ease, given that Bertino’s performed the procedure before, albeit rarely on children.
After that was performed successfully, the next steps were getting Ava off ECMO and breathing on her own and then addressing the massive bleeding she endured in the preceding hours and days from the various ECMO cannulas that were utilized in her veins and arteries.
That’s where vascular surgeons Drs. Katherine Teter and Joanelle Lugo came in.
While not normally a pediatric specialist, Teter’s job beyond just repairing the arteries and veins was clear.
“As a vascular surgeon in general, most of my patients are significantly older,” she said. “But I think what was really, really important to us is that we want to make sure we’re going to give her the ability to go back to a normal life and do the things she wants to do.”
And she wanted nothing more than to play softball. At the time, that seemed far-fetched.
Cleared to play … or maybe not
Getting back on the softball field became Ava’s singular focus for her recovery.
“It was maybe a few days before I was really reaching the end of getting out of the hospital and I was fighting really hard and I knew this is where I wanted to be,” Ava said. “I told myself I want to work to play softball. I knew this wasn’t going to stop me and I wasn’t going to let it and I kept telling everybody.”
Ava’s parents and Dr. Gabriel Robbins, Ava’s pediatric hematologist, had other ideas. They wanted to ensure Ava’s safety, with as much risk mitigation as possible.
Early on, that protective thinking prevailed.
“At first, I kind of said no because I was just thinking about everything that she had gone through,” Robbins said about the prospect of softball. “I was scared and I wanted to wrap her in bubble wrap and protect her from every contingency, no matter how rare.”
Originally, that decision crushed Michele.
“The first thing the hematologist said to me after they pulled the clots out, he asked, ‘Is she an athlete?’ And I said yeah. He asked what she played and I said softball, and he said, ‘Not this year.’ And we were devastated,” Michele said. “We were just like what do you mean? She said, ‘I’m going to get better to play.’ That was her whole motivation for getting better.”
Soon, Ava was making better progress, and at an accelerated pace. She wasn’t walking with a limp anymore. She didn’t need to see her doctors on video instead of in person.
Eventually, the season neared.
“I was like, ‘Well, softball is starting, I should really try to get better, and fight,’” Ava recalled. “And it took some time. I was really doubting myself at one point and I was like: ‘It’s dangerous. What if I get hurt? And then I remembered that I said in the hospital that I wanted to be here and play softball and fight really hard. And I stuck by my promise.”
And after four months of hell, if anyone deserved some good news, surely it was Ava.
Eventually, she got it.
“We realized that we didn’t really have a good reason medically to restrict her activities,” Robbins said. “And we knew consciously that she would be safe and be able to do these things and go back to a completely healthy, normal life.”
Even while the medical risks to Ava returning to play were low – she has an effective medication regimen and bad cuts are rare in softball – the parental worry remained.
But what also remained was the desire to ensure Ava got back to her life — which simply had to include playing softball.
“We do live in fear, but there’s too much other stuff going on to allow it to consume us,” Joe said. “But in the back of your mind, you realize at any given moment, anything can happen and your life can just change right there. But I don’t think you can let it consume you and I think that she has done a tremendous job to not let it consume her, because she’s the one I’d be most worried about. But you are always going to have that fear. You can’t not. You can’t not go back to that night of standing outside the ICU … . It’s always going to be in your head.”
A goal actualized
The season started and Ava was finally back where she wanted to be — in the Becton dugout — but as a manager and not yet playing for the Wildcats
“She didn’t [want to play] at first. She was nervous about what if something happened,” Joe said. “‘What if I get hit?’ And she originally said, ‘I want to be part of the team,’. so, they were going to make her the manager, and the first couple of games, she was just doing the book.”
But she hadn’t gone through all that just to do the scorebook.
She wanted to play and see meaningful action. So, she got her NJSIAA-required six practices in and suited up in maroon and gray. And immediately, she went on a tear, going 10-for-19 with nine RBI and three doubles over her first five games back.
“I knew she was going to be back but I didn’t think she’d be playing. Her recovery was unbelievable,” Becton coach Joe Coffaro told NJ.com. “I did not expect this when the whole incident happened. But she’s a fighter, and she fought through and she wants to play and she’s here.”
And though she’s only a sophomore, she’s already become a role model to her teammates and coaches alike.
“She’s a great example for all of us, even me as the coach and my assistants. What she went through — you don’t wish that on anybody … but she’s here and she’s doing a great job,” Coffaro said. “She hasn’t missed a beat. She has a great sense of humor. She’s never down. She’s always upbeat and I think he carries into our dugout with our other players.”
The season started with Ava on the bench, as the manager. It ended in the North 2, Group 2 quarterfinals in a loss to Passaic Valley.
But, for Ava, the season was never even supposed to start.
Miracle on E. 34th Street
Doctors, as science-based clinical professionals, may reject the notion of miracles and may have a scientific, medical explanation for everything.
But maybe they never met Ava Romano.
They can point to myriad medical reasons why Ava recovered so quickly.
But pure medicine doesn’t do it justice.
“As much credit as is given to the medical teams that take care of these kids, I think, equal, if not more credit, has to be given to the patients and the families themselves, because ultimately, they’re the ones doing the work,” Dr. Fisher, the surgical director at Hassenfeld Children’s Hospital, said. “We can cut and sew and put in devices and do operations, but at the end of the day, the patients bear that burden. So I think the miracle really is in the resiliency of the human spirit.”
In a role reversal, it’s Ava who inspires her parents and gives them strength.
It’s Ava, who, fully cognizant of what happened, asked her parents soon after waking up in the hospital: ‘I almost died, you know. Can we go to Disney?” (Michele said they’re eyeing a possible trip this summer and Ava has her eyes set on Universal Studios.)
It’s Ava, who, just wanting to get up to walk her dogs five months ago, almost died four miles down the road at Hackensack Hospital.
But most importantly, it’s Ava, who is triumphantly back playing softball for the team she loves when no one — not doctors, not her parents, and at times not even she — necessarily or realistically expected her to this year.
“It’s so hard for me to think that anything really happened because I just don’t feel like that. I think things happen for a reason and obviously it got bad, but I got better. And that’s all that really matters,” Ava said.
“In the future, I have to always remember what I’ve done and how I went from dying in the hospital to now. And I’ve got to always remember how I can do so much and fight so hard. So I’m trying to always remember that if I ever get down to myself again.”
Jake Aferiat covers the Big North, GMC, HCIAL, NJAC, NJIC, SEC, Skyland and UCC. He can be reached at jaferiat@njadvancemedia.com. Follow him on Twitter @Jake_Aferiat.
