NATHAN EBANKS FOUNDATION

Nathan's Story

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Nathan (God’s Gift) is the fourth child and second son of parents, Robert and Christine Ebanks. At five months gestation, it was discovered by the attending OB/GYN, through a routine ultrasound examination that he had  congenital diaphragmatic hernia ,  a very rare condition which affects mainly boys at a  ratio of 1 in 2,200 live births. From the  moment this was discovered by the specialist, the primary medical goal was to get Nathan to as close to full term as was possible, in order to increase his chances of surviving major corrective surgery at birth.

After a challenging pregnancy, Nathan was delivered on Tuesday May 4, 2004 at the University Hospital of the West Indies at 4:15am... he had made it to 36 ½ weeks. At birth, he weighed in at a whopping 5 lbs and 8 oz. He was immediately taken to the NIC unit,  where a specialist team were in waiting for his arrival. The team of doctors and healthcare professionals worked tirelessly to drain the fluids that had collected on his left lung and placed him on life support machines. He was stabilized within a couple of hours following birth. He underwent major corrective surgery at 2 days of age.  

Nathan at 10 Days old

Unknown to his parents, the worst was still yet to come.  Ten days post surgery, Nathan developed severe jaundice, with a Hyperbilirubinemia of 408, this was of  grave concern to his medical team, as this large an amount of bilirubin can circulate to tissues in his brain and result in seizures and significant brain damage.  It was touch and go for a while, but after much prayers, and the application of modern medicine (phototherapy), his body regulated itself and the levels normalized within 24 hours.

Nathan  being checked by his Surgeon

Nathan made a turning point at 15 days of age, and was discharged from the hospital  28 days following his birth, to complete his healing  at home with his eager family.

 Home Coming...

Nathan with the Discharging Nurse

Within the first month of life, Nathan experienced separation from his mother and family (due to the hospitalization), he survived major invasive surgery, had beaten jaundice and triumphed over death, but all that was just the precursor to his journey which was just beginning...

Cerebral Palsy Diagnosis 

As time passed, Nathan’s parents began to notice that he was not achieving typical milestone developments, such as sitting up, neck control and eating. They brought their concerns to the attention of his pediatrician, and though his pediatrician suspected him of having cerebral palsy at that time, this diagnosis would not be confirmed for a while.

Nathan's progress was monitored monthly by his pediatrician from about 3 months old, and at 7 months old, when his development had still not caught up, his pediatrician  referred him to a pediatric neurologist in Kingston Jamaica for assessment. The diagnosis of cerebral palsy was made when he was 9 months old, and with the diagnosis came the recommendation to enroll him immediately into a weekly physio therapy program.

His parent reflects that when they were given this "frightening diagnosis", the most difficult part was not the actual disability itself, but the lack of information that was available to them on his condition. For months the couple searched for answers only to discover that there was  very little answers that was forthcoming to help them understand the condition, how it would affect their son in the months and years ahead and what they could do to help him.

Nathan at 9 months old

Nathan began weekly physio therapy at 9 months old,  however this was still not enough to give his body the stimulation it needed to strengthen significantly. Nathan was willing and eager, but was "disabled" by the limitations of services and equipment that were available to him locally. This was highly frustrating for both him and his family, and at two years old, his family began searching for help for him outside of Jamaica. 

Phase 1 Intervention

In 2007, three months before his third birthday, the family was able to raise funds to take Nathan for his  first comprehensive evaluations and intervention at Health South Rehabilitation Hospital in Sunrise Florida. There as an outpatient, Nathan received his first comprehensive  evaluation by a team of interdisciplinary specialists comprising a Developmental Pediatrician at, an Audiologist (hearing assessment), Speech/Language  and Oral Motor Therapist, Occupational Therapist, Physical Therapist, Othotist, Nutritionist.

On that trip, he received his first body support comprising a benick body brace, Ankle Foot Orthotics (AFO's), soft helmet, leg mobilizers & hearing aids. It was later discovered that he did not need hearing aids. His family also received their first comprehensive training in caring for and supporting his development along with his very first Home Management Support Program which outlined his short and mid term goals and the stimulation and exercise routine to follow to help him attain these goals.

Within short order, Nathan attained all the goals set for him and returned for his follow up visit  two months after his first visit. Upon the recommendation of his team, dramatic changes were  made to his personal life. He was removed from a special educational setting and enrolled in  general education classroom. A nanny/shadow was employed by his family to go with him to school to attend to his physical needs and also to be his education inclusion facilitator.

The changes in Nathan as a result of this intervention were very dramatic, this inspired his  parents  to share what they had learned with other parents of children with disabilities in Jamaica.  This led them to host the first workshop for parents entitled "Building a Brighter Future for Jamaica's Special Needs Children" . Here with the assistance of corporate sponsors Supreme Ventures Ltd., Jamaica Biscuit Co Ltd. and Jamaica Broilers,  they shared  the community-based approach to rehabilitation model that they had learned in the United States. The workshop was well attended by parents, caregivers and teachers of children with disabilities and was very well received by all.

Weaknesses: Poor hand eye coordination, floppy upper & lower body, low muscle tone, drooling, fisting.  

Nathan at 3 1/2 years old

Nathan in Hyperbaric Oxygen Chamber

Nathan and Arianna, Occupational Therapist at Innovative Children's Therapy Inc.

The Suit (affectionately called the  'banana suit') utilizes technology, adapted from the Russian Space Program (read more) to treat children with cerebral palsy and other motor disorder, by helping to keep their bodies in proper alignment for the exercises. This helps the child's brain to map what this position in right alignment should feel like when performing a specific movement. So that over time they can learn to independently reproduce these movements.