Luis was two years old when he started complaining about back pain. Linda, Luis’ grandma, took him to his pediatrician who suggested that Luis was probably constipated. A few days later, while playing on the playground, Linda noticed that Luis was hunched over and walking strangely, then he was in too much pain to sit in his car seat.
Immediately recognizing that this was more than constipation, Linda took Luis to a pediatric orthopedist who scheduled an MRI. The MRI showed a Spinal AVM (Arteriovenous malformation - a rare abnormal tangle of blood vessels on, in or near the spinal cord) living at the bottom of Luis’ spine, near his bladder. Linda was in shock and so scared. A spinal AVM at Luis’ age is very rare and very rare for it to be found on the spine.
On November 9, 2016 Luis had a spinal laminectomy and was in the hospital for a full week. From there, Luis was admitted to PSE&G Children’s Specialized Hospital in New Brunswick. He arrived at the hospital in tremendous pain, having to lie flat and completely still for 48 hours and taking a lot of medication.
Linda was unsure if Luis would ever walk again. But the doctors and therapists got Luis working on his physical and occupational therapy right away. Linda stayed with Luis every night and his great grandma was with him every day. They watched as the therapists helped Luis to gradually relearn all his skills…sitting-up, stretching, eating, crawling, standing and eventually walking.
Luis, now 5, gets MRI’s periodically to confirm that the AVM has not returned. He continued outpatient therapy at Children’s for 2 years after he was discharged from the inpatient program. He just started Kindergarten and Linda says, “Nothing holds him back! He loves to play sports and he especially loves rock climbing!” She is grateful for the care Luis received at Children’s.
An outstanding third grade softball player known for her infectious smile and tenacity on the field, nine-year-old Leah was playing with her sister when she began to experience tingling in her fingers. Rushed to the emergency room, Leah remained in the hospital and was sedated for six days with no known prognosis.
Her parents, Abby and Peter were terrified for their daughter and their family. It was a nightmare. Each night, Abby prayed, “Maybe when we wake up she’ll be fine.”
Finally there was a diagnosis: a spinal cord stroke. This is extremely rare. Only 2% of all strokes originate in the spinal cord and they are almost unheard of in young, healthy children.
Abby and her husband Peter knew about Children’s Specialized Hospital from friends and family. They knew that Children’s Specialized was the best place for Leah to be for the greatest chance of recovery. When she arrived at CSH, Leah had difficulty breathing on her own. She had some muscle control of her right leg and could wiggle her toes, but she was in extreme pain. It hurt even to be touched.
Over the next eight weeks, Leah received physical, occupational, and speech therapy. Pool therapy was her favorite, and it was in the water that Leah took her first steps following her stroke. Abby credits the doctors and therapists at CSH for Leah’s miraculous recovery. “Without the non-stop energy, smiles, and hard work of her therapists, Leah’s story wouldn’t be as successful as it is. We know we chose the right place for Leah.”
Leah is doing well and is now on the road to recovery. She continues to receive outpatient therapy and is even back playing on the softball field.
Meet Conner: He is a happy, energetic nine-year old who loves playing with his older brother, CJ, and values his independence. This young boy with a warm smile and beautiful eyes has come a long way since he was born in 2010. His mom, Katiane, tells the traumatic story of his premature delivery at 25 weeks. At birth, Conner suffered a grade 4 brain bleed leading to a diagnosis of cerebral palsy, vision loss, and a seizure disorder. He stayed in the neonatal intensive care unit for 137 days. When the Drummonds were finally able to bring their baby boy home, he still had a feeding tube, heart monitor and oxygen tank. Katiane and Clinton were scared and overwhelmed when they first arrived home with Conner, but they were strong and determined to give him the best possible care.
Almost immediately, Conner began receiving early intervention program (EIP) services, funded in part by the Department of Health, coordinated by Children’s Specialized Hospital. This program provides early identification, evaluation and intervention for children up to three years of age who have a documented condition that impairs or has a high predictability of impairing normal development and/or who have measurable developmental delays. Services provided are speech, occupational, and physical therapies, nursing, social work/family training and developmental intervention (teaching). All of the services are provided in the child’s home or in a community setting where he or she is comfortable. In Conner’s case, in addition to working with a teacher for the blind, he received occupational and physical therapies.
When Conner turned three, he began outpatient physical therapy at Children’s Specialized Hospital’s Plum Street location with Lauren Castagna. “Conner has an incredible strength and willingness to achieve anything he wants,” says Lauren. “With the support of his family and dedication to his therapies, he has made great strides in his physical abilities. He also has the best sense of humor and contagious laugh, making every session with him a joy!”
Katiane appreciated always being involved in every aspect of planning Conner’s care, “All of Conner’s therapists, doctors and nurses always make sure I am included in every plan to benefit Conner’s development and meet his needs and, equally important, they taught me strategies to advocate on Conner’s behalf.”
In fact, this past summer the Drummonds travelled to Washington, DC to take part in Speak Now for Kids Family Advocacy Day and urge Members of Congress to improve healthcare for children with complex medical conditions by safeguarding Medicaid. “Though our story is not unique in that our child is different abled, Conner’s life shows the broad spectrum of difficulties that families face,” says Katiane. “Every child is different and each has a unique story, but too often children require extensive medical intervention that leaves many families like ours in financial distress. Our goal is to continue to work towards the accessibility of quality medical services for all children.”
Katiane also joined the Family Advisory Council at Children’s Specialized Hospital. The council is a group of families and staff working together to promote the hospital’s mission of family-centered care. The Family-Centered Care team provides the focus and unique family perspective required to build awareness, educate, engage, and fully integrate Patient- and Family-Centered Care principled into the healthcare policies, practices and services across the hospital. “I am so proud of al that Conner has accomplished and grateful to everyone at Children’s Specialized who has invested their time in him,” said Katiane. “I joined the council hoping that by sharing our story and experiences, we can make a positive impact for other families in similar circumstances.”
Conner is in school now and he continues outpatient therapies in Mountainside. Always seeking more independence, Conner has learned to crawl and loves the freedom that affords him. His feeding tube was removed when he turned five and with the help of occupational therapy he learned to spoon feed himself. All amazing milestones that he’s crushing! With the help of his therapists and the love and support of his family, Conner is making progress every day. And we can’t forget to mention that he loves to dance, dance, dance!