LI Mom of Desperately Ill Toddler: 'I Just Want My Baby Back'

GREENPORT, NY — A young mother, faced with the unthinkable when her toddler was placed on life support, opened her heart to share her journey and thank the community who has come together to help.

The days and nights have been filled with despair for Katria Nieves, of Greenport— who has been beside her 2-year old son Maxwell's side since he was hospitalized in December — and for his father, Marvin Bell and their other small children.

A GoFundMe page, "Help Baby Maxwell And His Family," was created by Team Maxwell in Greenport. The page has raised $11,025 of its $15,000 goal in five days.

"Maxwell is just 2 years old and has always been a happy, healthy and active boy," the page said. "In December he became ill and after numerous visits to the doctor and hospital he continued to decline. On Jan. 16, he suffered a series of seizures and a cardiac event leaving him on life support."

Maxwell's mom has not left the hospital, and his dad has been commuting from Greenport to Stony Brook University Hospital daily, as well as caring for their other two children, who are just 3 years and 6 months old, the page said.

"Both of Maxwell's parents are unable to work due to these heartbreaking circumstances. With no income currently coming in, the funds raised will help to pay for rent, utility bills, heat, food, diapers, formula — as well as the many other expenses that will come their way during this trying time. Your support will be greatly appreciated by this young family in their time of need," the page added.

This week, blessed progress has been seen: Baby Maxwell was taken off the ventilator; if he continues to improve, the tube will be removed and he will undergo surgery to place a tube through his stomach so he can eat.

While Maxwell is still intubated, she said, "My boy is finally breathing on his own!"

On Sunday, the doctors, she said, will attempt to remove his tube if he maintains his current breathing rate all day and Saturday evening.

"So please pray for his strength to get through the procedure," she said on social media. "His brain activity is slow and I have witnessed more seizure like episodes. . . We are still unaware of his physical capabilities but I have so much faith that my boy will do well with future physical and occupational therapy. He's still considered to be in critical condition but I am so hopeful and optimistic because my boy is strong beyond amazement."

Writing about her son this week on Facebook, Nieves shared the miracle of his continued recovery: "Yesterday Maxwell opened his eyes for an extended amount of time and now he smiles when we talk to him! After witnessing all that his little body endured firsthand, seeing him smile just made my heart melt. It really puts everything into perspective for me and has truly taught me to never take anything for granted."

However, daunting challenges lie ahead: "With the type of brain damage he has suffered he will have to learn how to eat, walk, talk, move all of his limbs — literally everything that has to do with moving any part of the body. He has also acquired secondary infections. His tiny body has been through so much trauma and we still don't know the severity of it all."

It's unsure yet whether her son will have to see his next treatment at an inpatient rehabilitation facility upstate, or at a facility closer to home.

"I am preparing to uproot my entire family to ensure the best chance for a full recovery for our boy," she wrote. "There are so many uncertainties. It's really all a matter of seeing what he is capable of and what he isn't. One things for certain is my baby is a fighter and his will to push through has inspired me in so many ways. He is my superhero."

Describing the dark nightmare of her son's illness, Nieves said she and her baby's father and their children Mia Bell, 3, and Myles Bell, 6 months, were all hit by a bug of some kind in mid-December, all vomiting and feeling unwell.

"Maxwell never got better," she said.

After four days, when he still wasn't recovering, Nieves said she called the doctor. And what ensued was a horrific month of uncertainty, as his parents were told that the baby had a stomach bug, and gastroenteritis.

Although he'd been taken to the emergency room, Nieves said the baby was sent home; they were told to keep him hydrated, which they did.

But still, Maxwell never rallied.

"He was home for Christmas, but he was still very weak. He wasn't able to enjoy his Christmas; he had no interest in his toys. That was hard to watch," she said.

About a week after Christmas, Maxwell went back to the doctor for his regular immunizations and flu shot, and for a few days, he seemed to be getting a bit better.

Nieves' mother's intuition, though, told her that something just wasn't right but despite her concerns and a number of doctor visits, the boy was sent back home with prescriptions.

She was plagued by questions and troubling symptoms — his eyes had rolled back into his head, and were twitching, she said. "I knew that something was wrong with my boy," she said.

Then came the day that will haunt forever: "It was 6 a.m. and his eyes were still going crazy," Nieves said. Their father stayed with the other children while she set off to take Maxwell to the hospital, something she thanks God she insisted upon doing.

"I was at the gas station in Greenport, and I went to open the gas cap," she said. "Something told me to look in the car. That's when he had his first seizure. I told the attendant to call 911. Then I brought him inside and put him on the ice cream case," she said, barely able to speak through the tears. EMTs and police raced to the scene.

Her baby, she said, had two more seizures in the ambulance, another as they were entering the hospital — and then, a fifth.

"They were rushing us to ICU and in the elevator, his heart stopped," Nieves said. "He flatlined in the elevator. No mother should ever have to witness their child being resuscitated. It was the scariest day of my life — the worst day of my life."

Racing out of the elevator and into ICU, the doctors did chest compressions, Nieves said. "That's something no mother should ever have to watch. I started to unravel."

Thankfully, the medical team got a pulse and intubated him immediately; he was admitted to the hospital on Jan. 16 and she has kept a fierce vigil by her baby's side, ever since. "Being a mother will truly test your will and drive to fight for your child," Nieves said. "After seeing everything he has gone through, I refuse to settle for what the doctor says if I don't feel that it's right. We always know what's best for our babies."

Sitting in the hospital at her boy's bedside, Nieves gives the doctors and nurses extensive reports and is his forever advocate.

"He's come so far — but he has a long way to go," Nieves said. "He's so strong, and has progressed so much. I'm so proud of him. He's my hero."

Her daughter, Nieves said, knows that her brother is sick — their home echoes with his absence.

Seeing her son so sick is the most unimaginable pain, she said. "I begged God for it to be me, instead. I just wish I could take it all away. He's so tiny. He's still a baby."

Despite the brain damage her son has endured, because children's brains are still developing, Nieves said there is hope, the chance that he will make a full recovery. But there are months of rehabilitation ahead — and the chance that their whole family might have to move upstate to a rehab facility.

"I'm willing to do that — I'm willing to travel the world, if I have to," she said.

Her son fights tirelessly for survival, she said. "I got my strength to get through this from him," she said.

But it's not easy, watching her tiny baby bearing the weight of such a painful struggle.

"I can see him fighting to lift his arms," she said, her voice breaking. "I know he's wondering why he can't move them. I wonder what's going on in his little brain, and I feel so badly. But he's a fighter."

Her son is still experiencing tremors, she added, and his eyes are still rolling and twitching, so he is monitored for seizures; he also is still battling secondary infections.

"We have a lot of unknowns," Nieves said. But despite the odds, she won't leave his side. "There have been some nights where I've literally stayed up, like a guard dog," ensuring that she reports every detail to hospital staff of her son's improvement —even recording videos to show them.

It was only when he was finally able to sleep through the night that she slept, too.

Now that's weaning off the ventilator, the chance that he could be sent for rehabilitation to a facility closer to home are improving, she said, adding that, no matter what, "I'm willing to do whatever it takes."

Nieves, a client support specialist for Community Action of Southold Town and a caregiver who helps the elderly in their homes, is unable to work as she fights for her son's recovery.

But nothing matters, nothing — except seeing her baby's smile again, hearing his laughter, watching him run. "I just want my baby back," she said, sobbing softly.

Watching him so desperately ill has been a blow to her mother's heart. "It's one of the most helpless, most vulnerable feelings," Nieves said. "I've gone to the chapel in the hospital, collapsed on the altar. I've screamed in that room. I don't wish this on any parent. To see your child go through this, it definitely rocks your world."

Her baby's father, too, is also a constant presence, caring for their other children and commuting back and forth to the hospital. "I would be able to stay here if it wasn't for him," she said. "Max is very close with him and his father is taking this really hard as well."

Nieves wants to thank the community and the legions of angels who have stepped forward to help her family during their darkest hour.

She thanked Heidi Powers and Holly Vescobi, with whom she works at At Home Services for Independent Living — although she'd never actually met Heidi, only spoken to her on the phone, Heidi has been a constant presence in the hospital.

"Heidi was here when the neurologist said my son had brain damage," she said. "I couldn't compose myself — but she was able to ask the questions. "

Nieves also wanted to thank her co-workers at CAST, Sharon Sailor and the staff at Front Street Station, Kait's Angels, the EMTS on the scene, "and anyone that kept my baby in their thoughts in prayers."

Also, she and Bell thanked the scores who have made financial donations. "I am just overwhelmed," Nieves said.

Describing her son, before his illness, Nieves' beams with love. "He is all boy," a child who loves watching landscapers at work, who's captivated by lawn mower and building things with blocks. "He loves picking on his sister," she said, laughing. "He's such a great little boy, just a little spitfire, who always gives me a run for my money. He's a child I just had to keep my eyes on — and I just really want that back."

It's her steadfast love for her boy that helps sustain her during the long, terror filled days and nights. "I know he's still in there," Nieves said. "Sometimes, he just looks at me as if he's saying, 'Mommy, help me.' I just want to hold him." Her baby, hooked up to tubes, makes her feel helpless, she said. "I cannot wait till I can hold him again, give him a real hug."

Until then, she said: "I just want to make sure that he is given every opportunity to come out of this as close to what he was before this nightmare began. He has a really long road ahead of him but I'll be right by his side — every step of the way."

And, she added on Saturday, after reporting her son's progress: "Last week this day was nowhere in sight for me. Maxwell has exceeded everyone's expectations. . . I will never stop fighting for my boy. We are in this together. Now, please, I beg of you to pray he gets through these procedures tomorrow. I swear, all of your prayers are what got us this far. I am so thankful and have never cried so many tears of joy in my life."

To donate to Maxell's GoFundMe, click here.

Patch photo courtesy GoFundMe, Katrina Nieves.

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