Our Champions

Justin's Story

When Justin was detected with an upper airway obstruction at 20-weeks gestation, it was determined he would need surgery to open his airways so he could breathe oxygen at the time of birth. "In order to do that we had to have a team from many different subspecialties - obstetrics, neonatology, and pediatric surgeons with skills in throat and advanced lung support techniques to support Justin with either his mother's placenta or an artifical heart lung machine until we made a new opening to the airway," Dr. Howard Heiman recalls. "His mom stayed at our adjoining Ronald McDonald House just before she went into labor so we could monitor how she was doing just in case she had any problems."

At the time of delivery, a meticulously prepared team of 30 specialists and technicans was on hand in the operating room to do its part in the complicated surgery. "We had scripted out all the contingencies so we had multiple hubs - all sorts of communication techniques. Everybody knew his/her role and the sequence of events. Justin required surgery immediately at birth with a specialized EXIT Procedure that allowed Justin to remain connected to his mom via the umbilical cord. The meticulous planning and team skills minimized the risk of losing Justin or his mother."

After life-saving surgery was successfully completed, and Justin was resuscitated, he remained in the hospital for several months for additional support during his recovery. Now a rambunctious two-year-old toddler keen on trucks and other toys, he's learning sign language alond with his big brother, Jason, who keeps a watchful eye on his every move.

 

Tali's Story

When Tali's life hung in the balance during a complicated delivery that resulted in placenta eruption, a neonatal team led by Dr. Susana Castro-Alcaraz saw to it that no long term damage was suffered by lack of oxygen and blood flow to the brain. Incorporating state-of-the-art brain cooling therapy, a cooling cap was placed on the baby's head to bring down her body temperature over a 72-hour period. At the only facility on Long Island equipped with this technology, the neonatal staff at Cohen Children's Medical Center put Tali's parents' fear to rest. "To be honest with you, things were so dire that it seemed to be that we didn't have a choice," her dad recalls, "so I put it in the doctor's hands. They said it was going to be okay, and they showed us how it all worked and now we have a talkative, healthy, baby girl."

Watch Tali's Story

 

Jayden's Story

When Maria and Carlos were referred to Cohen Children's Medical Center for the delivery of their premature baby boy, they found themselves immediately in good hands. Born at just 22 weeks gestation, Jayden received around the clock care from Dr. Richard Schanler and a team of nutrition specialists ready to make sure he received intravenous nutrition to stave off infections and aid his long-term development.

"With the help of the staff, they taught us everything we needed to know," his mom recalls. "They helped with everything, the pumping, and it wasn't easy. It was supposed to be a natural thing and it wasn't. When I came in here, they were as good to me as they were to my son."

Over the course of five months an expert team of dietitians, lactation consultants, neonatal nurses and discharge planners worked hand-in-hand to bulk up the young tyke who weighed just a pound and two ounces at his premature birth.

Jayden's parents now have a healthy and robust two-year-old and report he is a good eater. And what's his favorite food, mom? "We did go out and he loved filet mignon with mushroom sauce!"

 

Nate's Story

When four-year-old Nate was struggling with respiratory distress as a result of contracting the swine flu in 2008, his Winthrop Hospital emergency room doctor dad and LIJ obstetrics mom had no question in their minds where to turn for help.

"He was taken to Cohen Children's Medical Center Emergency Department and from there to the Pediatric Intensive Care Unit (PICU)," his mom, Sarah, recalls. "The staff was phenomenal. I can't say enough about them. It was a very trying time. It was touch and go for the first 72 hours." The possibility of losing Nate was very real. "The staff did everything they could to make us comfortable. We were by his side 24/7," she added.

Nate "The Great," as Dr. Pete Silver calls him, is now a healthy, charming and determined six-year-old thanks to the care of Drs. Myers-Doran, Silver, Schneider and Esperanza and the entire emergency and PICU teams. "You have to trust who is taking care of your child. For me, it was easier to step back because I don't do critical care. My husband does emergency medicine so he was more intensely involved."

Nate was given a vaccine 10 days prior to contracting the flu and his asthma condition also complicated matters. Incubated and connected to an oscillator ventilator, Nate remained in CCMC's PICU for two weeks on a respirator under sedation. The respirator was his best hope for getting better. "They were all standing by his bedside. They didn't leave. It was a real team approach to take care of Nate," Sarah recalls.

And how's Nate "The Great" getting along today? Nate can "outrun, outplay, outsmart and out-charm them all," his mother beams. "He's a dream child."

 

Kelly's Story

When Kelly, a 19-year-old Davidson College student, returned from a semester abroad in Ghana studying anthropology, she complained to her parents of feeling uncharacteristically fatigued. Her primary care physician diagnosed a hearty case of jet lag and she returned home to get some rest. Within a few days Kelly's symptoms progressed - she was exhausted and confused, beginning to feel sick. "My eyes were turning yellow. I don't remember too much after that," she recalls.

That's because once she was admitted to Cohen Children's Medical Center within minutes she was diagnosed as having malaria. Dr. Suchitra Acharya headed up the diagnostic team that called the blood bank for an exchange. "We needed to do an exchange to get rid of the parasites that were populating her bloodstream and give her a fresh new start. The blood bank was very responsive and within two hours we had a line in her," Dr. Acharya recalls. "If she hadn't gotten treatment right away, it would have been very, very serious and eventually fatal. Timing is essential. Thanks to a familiarity with the disease we were able to respond. You don't see malaria on a regular basis in this part of the world."

"It's a really horrible disease," Kelly cautions as she plans for yet another semester abroad. "It's just not something that usually happens to people, especially when you receive anti-malarial vaccinations before the trip, like I did. The CDC prescribed a treatment for malaria that was not helping me to recover. Dr. Acharya and the CCMC medical team thought of an alternative method of treatment - the exchange - which saved my life. I can't grasp how sick I was. But I'm ready to travel again." That's after Dr. Sunil Sood, a specialist in pediatric infectious disease, signs off on her pre-trip inoculations and precautions, according to her grateful parents.

Kelly did, in fact, travel again. The semester after she completed treatment she got the "all clear" from Dr. Sood. Kelly concluded her study abroad experience in the fall with an independent research on the proliferation of domestic violence through the machismo culture of Salvador da Bahia, Brazil.

Watch Kelly's Story

 

Patrick's Story

To see Patrick, 17, shoot hoops with his friends, you'd never know he was born with pulmonary valve stenosis and underwent two balloon catheterizations by the time he was three years old. He's tall, athletic and heading off to college. He sees Dr. Rubin Cooper annually and knows to take it easy if he gets winded.

"We were told from the very beginning this would be something he would have to deal with," his mom, Delores, explains. "He's a good basketball player and a good soccer player. He's never had any restrictions." "Without Cohen Children's Medical Center I probably wouldn't be where I am today - I am really grateful," Patrick commented. "They gave me a second chance to live again. From what I've been told and from what I understand, the doctors helped me a lot. I was encouraged to play sports. It's made me really healthy and happy."

Grateful his heart surgeries are a thing of the past, his mother recalled making the decision to contact Cohen Children's Medical Center. "I was uncomfortable with the care he was getting where he was when he was born, so we sought out care somewhere else. It was one of the best decisions I could have made." And thankfully for Patrick, who is a good student and enjoys high school, the toughest decision he has yet to make is, "he doesn't know what he wants to do for college yet - that's the big question."

Watch Patrick's Story

 

Jack & Maddy's Story

When Joe and Maura were told by their pediatrician that their daughter Madison needed to see Dr. Arlene Redner at Cohen Children's Medical Center right away, the first thing Joe thought was, "This is impossible, this is my perfect child."

When the chief of surgery met them at the door at Cohen Children's Medical Center and the medical team swiftly ushered their little girl into surgery, Joe remembered asking his wife Maura if they were getting special treatment. Later that year, while administering a sonogram to Maddy, the doctors suggested that maybe they should take a look at Jack as well since they are fraternal twins.

Their worst fears confirmed, Jack too was diagnosed with Wilms tumor (a cancer of the kidneys) and this was the first case Dr. Redner had seen where both siblings had developed the disease. "To say that your heart is in your stomach is an understatement," Joe recounted.

"You go through the whys, but at the same time we had been through Maddy's treatment, so we were seasoned veterans at that point. Sometimes you have to learn when to step back and let the doctors do what they need to do and when you have to step in as your child's advocate. I will have to say this hospital understands that."

"This was the first time I ever treated two siblings receiving therapy at the same time," Dr. Redner recounts. "It's more emotionally devastating for the family - it took more resilience on the part of the parents to get through this in double time. They were very different children and their reactions to chemotherapy were very different.

It was a long tough road for the twins and their parents the next two years, particularly for Maddy who eventually underwent more aggressive treatments. During that time their family bonded and found comfort in singing what became their family anthem, "Don't worry about a thing, 'cause every little thing is gonna be alright."

Thanks to the swift, proactive treatment of Dr. Redner and the surgical team, the twins are now back at school. "Children are amazing. Even though they are sick, they play. They do what normal children do, they want to go back to school and they love being children," Dr. Redner observed. "And that stays with them and makes them more resilient."

 

Tim Goettelmann's Story

Not only is Tim Goettelmann a champion on the lacrosse field—he's a true champion on the larger field of life for all he does for the children at Cohen Children's Medical Center. Nicknamed "The Monster" because of his status as the all-time scoring leader in Major League Lacrosse, Tim created the charitable organization Monster's Kids to serve the health needs of children. In its first year alone, the group raised more than $100,000 and donated it to Cohen Children's Medical Center. Tim continues to touch the lives of Long Island's youth.

 

Aiden's Story

At three months old, Aiden suffered from chronic eczema and his worried parents took him to their neighborhood hospital where it was discovered his platelet count was running consistently low. With the administration of a series of platelet transfusions, a confirmed diagnosis of Wiskott-Aldrich syndrome, a rare genetic blood disorder that affects only four in a million newborns and develops into life-threatening immune deficiencies, was determined. The only effective cure would be for Aiden to undergo critical bone marrow transplantation.

That's when his referring doctors turned to Cohen Children's Medical Center, the only bone marrow transplantation program for children on Long Island. Securely in the hands of one of the most active pediatric-exclusive stem cell transplantation teams in the country, Aiden successfully responded to the transplantation. "His platelet count is normal and, as you can see, we're looking at a healthy two-year-old," comments pediatric oncologist Dr. Joel Brochstein. "He's a very good example of how you can benefit from a concerted effort to overcome a very serious problem."

Watch Aiden's Story

 

Deborah's Story

It was a school day like any other, until the unthinkable happened. Deborah, then 14-years-old, was asleep in the backseat of a carpooling van on the way to school when it was struck by an oncoming vehicle. She was knocked unconscious and remained that way until arriving at a nearby hospital. Following an MRI, the attending doctors suggested she receive critical care for her traumatic brain injury at Cohen Children's Medical Center.

"She was in a medically induced coma." her dad recalls, "and when she came out of it she was already in the step down unit. The care was excellent. We basically lived at the hospital for the two-week period. We were there every shift, with every physician. It was uniformly excellent."

An honors student with a love for vollyball, Deborah vaguely remembers her hospital stay much to the relief of her parents and sister. Over the next three months she received inpatient and outpatient rehab and home tutoring which enabled her to return and finish out her 3rd and 4th quarters with straight A's. "I don't know what I would have done without the medical care and without my family and friends. Looking back on it, I realize it is amazing that I had the chance to go back to school at all."

Watch Deborah's Story

 

RaShawn's Story

With the incalcuable assist of a high frequency ventilator dubbed 'The Bronchotron,' the Cohen Transplant Team was able to stabilize and transport RaShawn from Southside Hospital in Bay Shore to Cohen Children's Medical Center just hours after his birth.

Suffering from lung failure and losing ground on conventional ventilation, RaShawn's life was dangerously hanging in the balance. Acting swiftly and deftly, the respiratory transport team rushed to stabilize RaShawn and begin life-saving ventilation therapy via the Airborne Life Support System while en route to CCMC. Providing the only mobile high frequency ventilator within 120 miles, Cohen Children's Medical Center is able to respond quicky and effectively.

"We were able to bring him in safely and effectively," his doctor explains. "There's a tremendous team that goes out. The transport nurse, respiratory therapists and EMTs all pull together to make the best transport team you can imagine. He's doing amazingly well."

Watch RaShawn's Story

 
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Randee Bloch

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516-465-2551
rbloch@nshs.edu

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