Superheroes aren’t just found in comic books and movies. Sometimes you find them in pediatric intensive care units. When 4-year-old Jake LaRose arrived at the Emergency Department at NewYork-Presbyterian, he was near death. A virulent strain of E.coli had destroyed nearly half of his digestive system. A team of pediatric specialists needed to stop the infection, then rebuild Jake’s gastrointestinal tract. All in all, Jake needed five surgeries over a 4-month period.
Jake was too young and too sick to remember the worst parts, but he does remember spending a lot of time in the Pediatric Intensive Care Unit. The Child Life team helped his mother create a book about the experience—a storybook with “SuperJake” as the hero, defying death and triumphing over the evil “bug” that had attacked him. Now 6 and living a normal life, Jake still asks his parents to read it to him at bedtime.
Amanda Hsiao’s daughter Leni had been a happy, healthy baby. But at age 3 months, something was clearly wrong. The question was, what? Amanda’s pediatrician didn’t know, so she sent them to NewYork-Presbyterian. A team of pediatric specialists discovered that Leni had a very rare form of leukemia and started treatment immediately. Thus began a year-long effort to save Leni’s life, a journey that included chemotherapy, a liver transplant and gall bladder surgery.
By the time Amanda was told she could bring Leni home, it had taken 10 doctors, 20 nurses and two NewYork-Presbyterian hospitals working together to get Leni healthy. Amanda jokes that she could be a tour guide for NewYork-Presbyterian at this point. The family wound up spending the Christmas holidays together in the Pediatric Intensive Care Unit, and Leni’s older sister still thinks that’s where Santa lives.
Skylar was just 1 year old when she came down with the first of several recurring fevers. Multiple blood tests over six weeks showed high platelet counts and infection but no cause. That's until her mom, Pamela, felt a golf ball–sized lump under Skylar's sternum. An imaging exam showed Skylar had hepatoblastoma — cancer of the liver.
"We were very frightened, very scared, very angry," Pamela recalls, "but we said, 'She's going to live. So where's the answer?'"
They brought her to NYP Morgan Stanley Children's Hospital — one of the few places researching hepatoblastoma genetics targeting the molecular biology of individual patients' tumors. They put themselves in the care of Dr. Darrell Yamashiro, a pediatric oncologist specializing in the treatment of children with liver cancer.
Pamela was also thrilled at the opportunity to take a holistic approach through our Center for Comprehensive Wellness, where doctors integrated alternative therapies, supportive care and survivorship wellness into Skylar's treatment, right from day one.
Dr. Yamashiro first prescribed neoadjuvant chemotherapy to shrink Skylar's tumor. This allowed renowned liver surgeon Dr. Tomoaki Kato to reduce the risk of complications during the surgical resection he would later perform. Skylar continued to receive combination chemotherapy and completed her treatment that September.
Today, Skylar has no evidence — or real knowledge — of the cancer she overcame. Her parents are ready with pictures and details for whenever she asks. For now, Skylar is a bright-eyed, 5-year-old preschooler who loves to swim and read books about koalas.
Synique was born prematurely at 33 weeks with VACTERL syndrome, dealing with multiple issues ranging from fused ribs and extra digits to issues with her kidney and bladder function. Her mom immediately brought her to NYP Komansky Center for Children's Health for the extensive urologic and orthopedic surgeries she needed to correct this. Over the next few years, Synique's kidney function declined and she began receiving hemodialysis in October 2011. She would soon need a kidney transplant.
While on dialysis at just 5 years of age, Synique made up songs about all the exciting things she planned to do for the first time in her life after the operation: go to school, play at the beach and splash in a pool.
In September 2012, she received a kidney from her mother. "I was the best match," says Synique's mom, "… and I wouldn't have it any other way."
The transplant performed by Dr. Sandip Kapur was successful but the surgery was extremely complex. Urologist Dr. Dix Poppas operated to make the urologic alterations necessary after Synique's transplant.
Happily, this feisty and confident little girl is now thriving — doing everything she sang about and more.
When Nile was 3, he had a fever that wouldn't go away. Doctors thought it might be a virus. But when his parents noticed Nile was also struggling to maintain his balance and remember the alphabet, they insisted on an MRI. It showed Nile had a tumor with two golf ball–sized cysts pressing up against his pituitary gland and optic nerves. He was rushed to NYP Komansky Center for Children's Health, where doctors drained the liquid from the cysts using a camera inserted through a small hole cut in his skull.
Dr. Jeffrey Greenfield diagnosed Nile with craniopharyngioma, which meant the tumor at the base of his brain was benign but had to be removed because it could cause blindness. The doctor delayed surgery, hoping Nile's nasal passages would open up as he grew because he thought they would be able to remove the tumor through his nose.
In November 2013, the cyst ballooned and Nile underwent surgery. The risks were great. It was likely he'd need a shunt to alleviate brain fluid. He might need a wheelchair and the surgery might affect his memory. "I was just hoping he would remember me," said Nile's dad.
During the surgery, doctors threaded rod-like cameras up Nile's nose to transmit images of his brain. They cut through the small bone, separating the sinuses from the brain, and removed the tumor from the base of the skull. The surgery couldn't have gone better. They were able to remove 98% of the tumor with a procedure lasting close to seven hours. Doctors will monitor the residual 2%.
Nile was able to walk out of the hospital with no shunt and with his memory intact. His dad says, "He became known around the hospital as the kid who had a miraculous recovery."
When she was just an infant, Cianah suffered a severe stroke that rendered her paralyzed on one side of her body. When she had another stroke, her parents brought her to NYP Komansky Center for Children's Health. She was ultimately diagnosed with Moyamoya Disease, a very rare vascular disorder in which the arteries of the brain slowly shrink, compromising the flow of blood. If untreated, Cianah would suffer repeated strokes.
Cianah benefited from the collaboration between the adult vascular and neurosurgery programs specializing in stroke at NewYork-Presbyterian/Weill Cornell. Crucial to her care were her interventional neuroradiologists, pediatric intensivists, child neurologists and pediatric neurosurgeons from NYP as well as her hematologist at New York Methodist Hospital (part of the NYP system) — all working closely together to develop a plan for her treatment.
Dr. Mark M. Souweidane and his team performed a neurosurgical procedure in which they move an artery of the scalp through an opening in the skull and place it onto the surface of the brain. Over time, the brain begins to "recruit" branches from this donor artery to provide a more normal blood flow and prevent further strokes.
Cianah has had no more strokes and is doing beautifully. She loves to dance and read The Cat in the Hat. Her only memory of the hospital is the playroom, "full of every kind of toy," she says. "I can't even name them!"
When Jack's mother was five months pregnant with him, Jack was diagnosed with a very rare and often deadly congenital heart defect in which the left side of the heart does not develop. Jack would be born with half a heart. But, at the time, his parents refused the advice of their doctors to give up on the pregnancy. Instead, they brought him to NYP Morgan Stanley Children's Hospital, which has the highest survival rate for pediatric heart surgery in the Tri-state area. "If our child was going to have a fighting chance, it was going to be here," says his mom.
Jack went through a series of three very complex operations performed by Dr. Emile Bacha, the first of which was performed when he was just 4 days old. Each surgery carried significant risk of serious complications. However, Jack proved to be an incredibly resilient patient and the surgeries were enormously successful — Jack has been meeting all his developmental milestones.
"Our Jack did the opposite of everything they said would be typical — he rallied through."
Today, Jack is an energetic little toddler who plays baseball and runs around very fast. His favorite thing to do is "play with Mikey [his cousin]."
Matthew was diagnosed at birth with Sickle Cell Disease — a condition that affects red blood cells carrying oxygen to various parts of the body, harming vital organs and causing infections, strokes and anemia.
As Matthew grew, sickle cells began accumulating in his spleen, causing it to enlarge. When the hospital treating him at the time recommended organ removal at age 3, his mom was determined to find another answer. She called NYP Morgan Stanley Children's Hospital and was both shocked and relieved to find out that not only was there a better way to manage sickle cell disease, but there was actually a cure. It was through bone marrow transplant. And the Sickle Cell Transplant Program at NYP is one of the largest and most successful in the Tri-state area offering bone marrow transplantation.
Although siblings are usually a patient's best chance for a bone marrow match, Matthew's sister was not. By the fall of 2006, his hemoglobin levels had plummeted to dangerously low levels, requiring blood transfusions every 10 days. But Matthew soon received an umbilical cord donation — a match that would enable stem cells from the umbilical cord to grow into healthy bone marrow with no sickle cell disease.
In May 2007, Matthew underwent his bone marrow transplant with Dr. Monica Bhatia. He was in the hospital for three months receiving treatment and was pronounced completely cured of Sickle Cell Disease one year later. Today, Matthew is a healthy, bright fourth-grader with a very positive outlook: "There's always a cure to something," he says. "We might not have found it. But if you look, you can probably find a cure."