When Marianny Hilario was pregnant, her doctor told her there was a problem with her unborn son. “When I was pregnant with Kyle, the doctor recognized that his kidneys weren’t forming as they should,” recalls Marianny. “They told me he may be born with Down syndrome. I knew my baby was strong, because I could feel him moving so much inside of me. I knew I had to give him a chance and I know that God wouldn’t give me anything I couldn’t handle.”
Kyle was born at 37 weeks and needed to be in the neo-natal intensive care unit (NICU) for three months after he was born. When Kyle was a year old, he was referred to Kenneth Lieberman, M.D., chief of Pediatric Nephrology at the Joseph M. Sanzari Children’s Hospital at Hackensack University Medical Center. While Kyle did not have Down syndrome, he did have a chronic kidney condition.
“Kyle was born with a blockage in his urinary tract,” said Dr. Lieberman. “It’s the most common cause of renal disease in infant boys and because his bladder couldn’t empty normally, the urine would back up into his kidneys and caused the kidneys to be damaged. As a result, his kidneys developed scarring and his kidney function continued to deteriorate.”
Dr. Lieberman treated Kyle for kidney failure, which included supplemental feedings through a tube in his stomach, special diets and medications. Over time, Kyle’s kidneys continued to deteriorate. The next step was a kidney transplant or dialysis.
“When I met Kyle, he had stage four chronic kidney disease out of five. This meant his kidneys were only functioning about 15 percent,” said Michael J. Goldstein M.D., director, Pediatric Abdominal Transplantation and director, Pancreas Transplantation, Division of Organ Transplantation at Hackensack University Medical Center. “It’s very difficult to dialyze children because of their small size. The best treatment is transplant.”
There were no potential living transplant donors. Six months ago, Kyle was placed on a kidney transplant waiting list. On December 23, Marianny’s prayers were answered when she got the call that a kidney was available for her son.
“I could not have been any happier to hear that news,” said Marianny. “To me Dr. Lieberman is an angel. When we got the call that Kyle was getting a kidney, he was here all day with us.”
At three-years-old, Kyle Lugo is one of the youngest patients to undergo a kidney transplant at Hackensack University Medical Center.
“Luckily, he never had to undergo dialysis. He received a kidney offer the weekend of Christmas and I transplanted him Christmas Eve,” said Dr. Goldstein. “Everything went better than could possibly be expected. Kyle received an adolescent kidney and the operation took four hours to complete. He was discharged four days after the surgery, which is earlier than expected. The kidney worked right away. And Kyle began eating again, which he had not done for some time.”
Over the last two years, Kyle has been under the care of several specialists, including those in pediatric nephrology, transplant surgery, pediatric cardiology, pediatric infectious disease, pediatric urology, pediatric feeding specialists, pediatric physical therapy, occupational therapy and orthopedics and speech and language development specialists.
“It’s this patient-centric, coordinated team approach to care that makes all the difference in the lives of our patients,” said Ihor S. Sawczuk, M.D., president, Hackensack University Medical Center. I am so proud of this team for taking such good care of Kyle and seeing him through this difficult time in his life. It brings me great joy knowing that the hard work of our dedicated team members has changed Kyle’s life so greatly and has given his family new hope for the future.”
According to Dr. Goldstein, children who suffer from chronic kidney disease don’t experience childhood in the way most kids do. “They don’t play the same way, they don’t grow the same way and they reach their milestones at a much slower rate,” said Dr. Goldstein. “They require medications and catheterizations on a regular basis. Kyle is the size of the one year old. The amazing aspect of transplanting them is that they quickly recover back to normal and live normal, healthy lives.”
Six weeks after the surgery, Marianny says her son has already had a growth spurt. His shoe size increased two sizes and his skin tone has changed completely. And, that’s not all. “He’s now active, all day and full of energy. He doesn’t stop. And, nothing bothers him. It’s amazing how much better he feels now.”
“To see a child who I met two years ago, who was in the midst of such great difficulties and we carried him through some really rough times, and now to have normal kidney function is so gratifying,” added Dr. Lieberman. “Now to have this kind of success and to see his future really turn much brighter, there is just nothing like it.”
Kyle will remain under follow-up care and will see a doctor weekly for three months. He will then see the doctor on a monthly basis for the next year. In addition, Kyle will likely need some physical and occupational rehabilitation to get him ready for the next big step in his life, pre-school.
“I can’t say enough about the transplant team at Hackensack University Medical Center,” said Marianny. “They were such a comfort to me during Kyle’s surgery. And, I cannot thank Dr. Lieberman and Dr. Goldstein enough for giving my son his life back. I can’t wait to see Kyle grow. I just want him to have a normal life. I’m filling out all the paperwork to get him ready to go to pre-school. This is truly a Christmas miracle.”
CAR-T Cell Therapy at the Children’s Cancer Institute
Hackensack University Medical Center is participating in a groundbreaking pediatric oncology immunotherapy program, provided in collaboration with Novartis Pharmaceuticals, as a member of a network of certified treatment centers. This program targets a common childhood leukemia.
This approach, which harnesses a patient’s immune system to fight disease, involves engineering a patient’s own immune cells to recognize and attack cancer. This therapy has resulted in long-term remissions in the majority of patients treated to date. Hackensack University Medical Center is the only hospital in New Jersey offering this CAR-T Cell therapy.
35th Annual Pediatrics Conference in Hilton Head
The Annual Review of Developmental Behavioral Disorders and a Spectrum of Pediatric Challenges conference took place from May 21-23, 3017 at the Omni Hilton Head Oceanfront Resort. It was the 35th annual national conference providing an intensive learning experience for pediatricians, pediatric subspecialists, and other pediatric health care providers. The event was founded by Marvin I. Gottlieb, M.D., PhD and featured presentations from several thought leaders that focused on the interdisciplinary approach to diagnosis and management of developmental and behavioral problems and the impact that developmental disabilities and behavioral disorders have on the child, family, educational system, health care provider and community.
Jenna Cappello was a perfectly healthy teenager until 2013. That’s when she started to have some troubling symptoms. Sinus issues, joint pain, skin sores and difficulty breathing sent her to the Pediatric Rheumatology Division at the Joseph M. Sanzari Children’s Hospital at Hackensack University Medical Center, where she was diagnosed with granulomatosis with polyangiitis (GPA), formerly known as Wegener’s granulomatosis. The uncommon disorder, rare in children, causes dangerous inflammation of the blood vessels, which commonly affects the skin, sinuses, joints, lungs and kidneys. “GPA can affect almost any organ in the body and requires intensive therapy,” says pediatric rheumatologist Jennifer Weiss, M.D., who diagnosed Jenna and coordinates her care. “Medications often need to be given intravenously, causing patients to miss work or school.”
Because GPA can affect many different organs, Jenna had to see multiple specialists. Fortunately, The Children’s Hospital offers all the subspecialists needed so that Jenna can receive most of her care in one location. She is also under the care of pediatric pulmonologist Ada Lee, M.D.; pediatric otolaryngologist Huma Quraishi, M.D.; pediatric dermatologist Emily Berger, M.D.; and pediatric cardiologist Subhashini Subramanian, M.D. “Having the doctors in one place and being so willing to work with us and each other is a weight lifted off us,” says Kelly, Jenna’s mother. “I don’t need to bring Jenna’s records with me or wait until the next doctor visit to let one of them know what happened with the other doctor.” Jenna is also participating in a clinical research trial through the hospital, looking at the effectiveness of a medication called rituximab on youth with GPA. “We’re a well-oiled machine when it comes to participating in clinical trials and research, making innovative treatments available to our patients,” Dr. Weiss says.
Although GPA cannot be cured, Jenna’s doctors have worked together to find a way to control it. “The Children’s Hospital is complementary,” Kelly says. “All the doctors and staff work together to do what’s best for the kids.” Jenna, now 17, has her driver’s license and is gaining back some of the independence the disorder has taken. She participates in a camp for kids with arthritis every summer, and her own experience has inspired her to become a child life specialist. “My husband and I appreciate the outstanding care,” Kelly says. “Everyone remembers my daughter’s name and who she is, and that makes her feel like a person. It’s amazing for me that we’re being heard and not just being told.”
Ihor S. Sawczuk, M.D., FACs
Dianne Aroh, MS, RN, FACHE, NEA-BC
Executive Vice President, Chief Clinical and Patient Care Officer
Mark D. Sparta, FACHE
Executive Vice President, Chief Operating Officer
Executive Vice President, Population Health Clinical Operations
Chief of Staff
Jeffrey R. Boscamp, M.D.
Senior Vice President, Chief Academic Officer
Carol L. Barsky, M.D., MBA
Senior Vice President, Chief Quality Officer
James De Rosa
President of Finance, Acute Care Services
Vice President, Senior Operations Officer, Children’s Enterprise
Vice President of Facilities, Capital Construction & Campus Development
Terri Freguletti, RN
Vice President, Perioperative Services
Jason Kreitner, FACHE
Vice President, Senior Operations Officer
Vice President, John Theurer Cancer Center
Director, Corporate Compliance
Morey Menacker, D.O.
Vice President, Specialty Care and Care Transitions, Physician Services Division
Kunle Modupe, MS
Vice President, Hospitality Services
Loretta Orlando, Esq. RN
Associate General Counsel
Sharad Sahu, M.D.
Vice President, Regional Clinical Integration
Lisa Tank, M.D., FACP
Vice President, Chief Medical Officer
Vice President, Development Principal Giving
Medical/Dental Staff Leadership
Thomas Salazer, M.D.
Sarah Timmapuri, M.D.
George Ferrone, M.D.
Deborah Goss, M.D.
Sanjeev Kaul, M.D.
Sarita Rastogi, M.D.
Immediate Past President