What's hardest about having your baby in intensive care? Everything
By JOHN ROMANO, Times Staff Writer
Published December 23, 2007
LOS ANGELES -- In a room of persistent and unnerving noise, you shudder at what you do not hear.
The pediatric intensive care unit of the UCLA Medical Center is a marvel of beeps and buzzes, of clatter and commotion. The lights are always on, the staff is forever lurking and the chirping machines never take rest.
It is here, in the bed nearest an emaciated Christmas tree, that 2-month-old Alexander Montoyo begins to cry. His face contorts, his tiny toes curl. His mouth opens and closes, his tongue peeks out and recedes.
And through all of his agitation, this screaming baby does not make a sound.
The ventilator that snakes down Alex's throat prevents any noise from escaping. So the silent cry goes on and on, as Charlie Montoyo stands over the bed and gently pats his son's scarred chest.
And you realize, for the first time, waiting for a miracle is a hard way to live.
Chances are, you do not know Charlie Montoyo, although you may have seen examples of his work.
B.J. Upton and Delmon Young. Carl Crawford and Rocco Baldelli. Scott Kazmir and James Shields. At one time or another, Montoyo was responsible for getting them all prepared to play major league baseball.
Montoyo has been a Rays minor league manager at every stop in the system, including some that no longer exist. He was in Princeton before he was in Hudson Valley. He was in Charleston on his way to Bakersfield. He was in Orlando and moved with that team to Montgomery. Now, having just finished his 11th season, Montoyo is the manager at Triple-A Durham, putting him, theoretically, a phone call away from the big time.
Alex, of course, knows none of this. His world, so far, has been confined to three hospitals and barely a moment of peace. He has flown in a helicopter and an airplane, but has never been home to see his room. He has had open heart surgery twice, but has never been nipped by Gabby Montoyo, the flesh-consuming cat.
"Every time I see a pregnant lady in here, I pray to God that her baby is fine. Because you have no idea. You have no idea what can happen," Charlie said, sitting in the lobby of the medical center. "If your baby is healthy, thank God 20 times. I used to thank God for my other little boy because he's happy and healthy, but I appreciate that even more now."
Alex was born in Tucson on Oct. 17 -- his father's 43rd birthday -- and spent 30 unhurried minutes with his parents before a few routine tests begat the opening lines of a story almost too painful to tell.
Alex was diagnosed with Ebstein's anomaly, a scientific way of saying his heart was practically useless. He had only one functioning chamber in his heart, and so blood was not being pumped in the proper quantity or direction.
Before midnight of his first day of life, doctors decided Alex needed to be airlifted to a children's hospital in Phoenix. So, 11 hours after giving birth, Samantha Montoyo, 33, insisted she be discharged so she could get in a car with Charlie and begin their drive into a nightmare.
What the Montoyos did not know as they rode through the desert toward Phoenix was that Alex already was proving to be stronger than reason. It wasn't until weeks later, when Samantha was sneaking a peek at her son's charts, that she discovered a note written by a cardiologist in Tucson that was given to the transport crew in the helicopter.
It said Alex was not expected to survive the trip.
* * *
You talk to Charlie and Samantha about the hardest part of the ordeal, and their responses are never the same.
It is sitting all day in the ICU and watching a baby struggle for breath. It is the constant fear of laying your head on a pillow and not knowing what you may discover on the other side of sleep. It is recognizing the hardship this has placed on their 5-year-old son, Tyson. It is the things they do not know and, worse, the things that they do.
Eventually, you come to a realization.
The hardest part of the ordeal?
"Every day there's something new," Samantha said. "That's the scary part. You're going along fine and then: Wham! Everything changes."
Can you imagine, after spending another day at the hospital, coming home and opening the mail to discover a bill of more than $500,000 the insurance company disputed? Do you panic, knowing this is just the beginning? Do you cry, knowing your future has irretrievably changed? Do you curse, knowing the injustice of it all?
"I don't even think about it," Charlie said. "You want my house? You can have it. Just take care of my son."
* * *
Within hours of his arrival in Phoenix, Alex had a balloon inserted in his heart. Not long after that, doctors cut open his chest, split his ribs and inserted a shunt in his heart to redirect blood flow.
The shunt? It was about one-eighth of an inch.
They tried removing his ventilator but had to replace it a short time later. Soon, they began to worry that surgery would not be enough. That, eventually, a heart transplant would be necessary. And if they didn't move on it quickly, Alex would be susceptible to infections. That his other organs might fail, and that would rule out any transplant options.
So they flew him to the UCLA Medical Center, one of the leading transplant facilities in the nation. Once there, the Montoyos were told that a transplant is not the best option, but rather a last option.
Transplants are far from a perfect cure. Recipients are forever taking large doses of medication, and even successful transplants need to be repeated every 10 years or so. A further complication for children is that they can not be immunized, so even routine illnesses can become lethal.
And for a baby as young as Alex, available hearts are rare. UCLA performs about two dozen pediatric heart transplants a year, but only two or three on infants.
"They say 'transplant,' and you think, 'Okay, his heart doesn't work, we'll get one that does,'" Samantha said. "Then they tell you all the things that go along with a transplant and you're like, 'We don't want that.'"
A week after his arrival, doctors performed a second open heart surgery, and the shunt was modified. The right side of his enlarged heart was also snipped and folded over to reduce its size.
Doctors are now hopeful that they are on the right path. That, with two more operations in the coming months, Alex could still get years of use from his original heart. He's just so far behind nutritionally that they need to increase his weight and strength before trying to remove the ventilator again.
"It's a very tricky balance we have to maintain. We don't want him to struggle so long that he gets too sick for a transplant," said Dr. Juan Alejos, UCLA's medical director for the pediatric heart transplant program. "But a transplant is not a perfect solution because it lasts, on average, 10 to 12 years. We really have to get pushed into a corner where we have no other good options. He may need one anyway 10 or 15 years down the line. But we'd rather do it then."
The problem is there are more variables than absolutes. Alex seemed content and alert on Tuesday, staying awake late into the night and staring at the mobile above his bed. On Wednesday morning, he began turning blue and doctors and nurses crowded around his bed to manually pump breath into his lungs. It happened again Wednesday afternoon.
This is the sort of thing Charlie was talking about Tuesday night as he walked to the pediatric ICU.
"I hate this part," he said quietly. "Every time you walk in here, the moment the doors open, you are hoping there are not 20 doctors on top of your baby."
* * *
The hospital social worker thought she was helping. When she told Samantha she could put her in touch with the families of other pediatric heart patients, it was undoubtedly done with the best of intentions.
"I told her absolutely not," Samantha said. "I did not want to get close to another family, and then find out their baby was getting a heart that could have gone to Alex. Or the other way around. The only reason I'm here is to fight for my baby. I'm not here to socialize.
"I told her, 'If you want to put me with liver or kidney families, that's fine. But no heart patients.'"
It is an unsettling experience spending your life in this ICU. There are no walls, no privacy, no secrets. You know what's wrong with the little girl in the next bed, and you wonder why the parents never visit the little boy on the opposite wall.
UCLA is a teaching hospital, so doctors make their rounds with the residents following closely behind from bed to bed. You can't escape the diagnoses of other patients no matter how hard you try.
Charlie recently became aware of an infant boy from Mexico whose mother spoke little English. Charlie knew the feeling. A little more than 20 years ago, he arrived in California from Puerto Rico to play junior college baseball, and he had no idea what his English-speaking coach was saying when he picked him up at the airport.
So Charlie struck up a conversation with this young woman named Selena. He offered to take her shopping because she had no transportation. They became friendly in that forced-circumstance sort of way.
The other day, Charlie was heading to the ICU and saw Selena holding her baby in a rocking chair. She smiled at Charlie and he gave her a little wave. At the nurse's station, he asked how Selena's little boy was doing.
He passed away a short time ago, Charlie was told.
As he recalls the story, Charlie stares off in the distance, his eyes reddening.
"The way she smiled at me," Charlie says before pausing.
"It was almost like it was a relief for her."
* * *
The plan is to take Alex's breath away. Little by little, try to wean him from the ventilator.
They were supposed to start a few days ago, but his heart has been behaving abnormally. So there are more tests. More discussion. More waiting.
Charlie and Samantha have not been home for two months. They lived at a Ronald McDonald House in Phoenix, and now have rented a one-bedroom apartment across the street from the UCLA Medical Center.
They missed Tyson's fifth birthday in Tucson last month and were determined to give him a normal Christmas. So one of the first things Samantha did in L.A. was buy a tree. And when her mother brought Tyson from Arizona, they decorated the tree together. Tyson picked out a special ornament for each of them. A heart for Samantha. A Christmas ball with the three kings for Charlie. And a reindeer ball for his little brother.
Every morning, Samantha walks to the hospital and sits for hours with Alex while Charlie watches Tyson. At midday, she comes home and trades places with Charlie.
What they are waiting for, they are not really sure. They have been told before that everything was going well, and they should be home in a matter of days. And every time, there is another setback.
Maybe he continues to get stronger, or maybe he needs another operation. Maybe they decide a transplant is a necessity, or maybe they continue their hopeful wait.
"Since we've been here, a kid has died at least once a week. You hear it. You hear their parents. You hear their mother sobbing," Samantha said. "We were there one night and the mother is screaming at the doctor who is sitting on their child banging on him trying to get his heart to start. You see that ... how do you not think about that happening to you?
"I think about it. I've tried to stop thinking about it. I swear to God, I've tried. I have said we might have to sell our house because our neighbor, two doors down, had a baby a week after us. And if we don't all go home, we will sell this house because I will not be able to live next door to a little baby.
"But then there are days when I'm rubbing Alex's head, and I tell him there is no way I'm leaving here without him. I will will him out of that bed if I have to."
The conversation has ended, and it is time to get back to the hospital. Charlie has just called to remind Samantha to bring fresh batteries for the mobile above Alex's bed. So she puts a jacket on Tyson, locks the door and begins walking up the hill between their apartment and the hospital.
And you realize, in a story without answers, this is the only certainty.
Charlie and Samantha Montoyo will wait as long as it takes.
John Romano can be reached at email@example.com.