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Abu Dhabi: Never give up hope, says mother of child with cerebral palsy

'I have decided to share my story -- hoping it would help any other family overcome their challenges and think of them as opportunities instead'

Lydia Haddad is a strong-willed medical professional and mother of two children, one of them born with cerebral palsy. For nearly two decades, the Lebanese expat has been looking after sick babies as a neonatal nurse in the NICU. And in the past eight years, she has used all her experience to help her son Tarek fight his daily battle.

“My son was born on June 3, 2014, in my home country of Lebanon, with a condition called hypoxic ischemic encephalopathy despite a healthy pregnancy and absence of any risk factor that might have caused it,” said the current assistant director of nursing in Corniche Hospital.

Hypoxic ischemic encephalopathy is a serious birth complication where the brain doesn’t receive enough oxygen or blood flow. Tarek developed seizures after just 2 hours of birth.

“An MRI scan showed severe injury on some part of his brain. Doctor said we may lose Tarek or even if he survives, he might be paralysed or have mental challenges. He was placed on oxygen therapy and subsequently admitted to the NICU.”

By the age of 2 years, up to 60 per cent of infants with hypoxic ischemic encephalopathy die or develop severe disabilities. While Haddad’s medical knowledge and experiences left her numb, a mother’s gut feeling, and inner voice convinced her that they will overcome this situation. A family was in prayers, and they were answered as little Tarek refused to give up.

“Tarek fought for his life. He managed to get off oxygen therapy after a few hours. He was very active and fully fed after a week of life. His seizures stopped after three days. Before getting a discharge, his medication was stopped with no further recurrence. We took him home on day 14.”

By July, the family was back in Abu Dhabi and continued follow-up treatment for Tarek.

“We booked him straight with a neurologist for a follow-up on his injury. After many discussions, we decided to fly him to the US for stem cell injection. We went thrice in four months even though there was not enough evidence to support it for such cases but we felt a need to do anything to prevent complications.”

Tarek, with motor complications, was put on physiotherapy from four months of age, occupational therapy from eight months and speech therapy when he turned 2. Haddad has guided her son on each step.

“Tarek is now seven-and-a-half years old. He has cerebral palsy. He goes to Repton School with the assistance of a shadow teacher. He can walk, talk, play and engage in most of the activities. Despite his busy schedule every day of school, therapy sessions and activities, Tarek has the best attitude and most wonderful sense of humour. He’s very intelligent and smart but continues to have challenges mainly with fine motor skills. But nothing will stop him from trying many times in different ways until he gets it right. His persistence and determination are unparalleled. His nine-year-old sister Alia has been his greatest support since the first minute of his life. We couldn’t have wished for a better outcome for a similar case.”

Haddad underlined that her journey has been a successful one so far because of the strong bridge between her personal and work life.

“I have finally decided to share my story hoping it would help any other family overcome their challenges and think of them as opportunities instead. As a mother, you would always do everything to keep your kids healthy, happy, and safe but my personal experience gave me more drive to help, advise and support other families who have similar challenges. Early involvement and early intervention are always the key regardless of our medical or nursing beliefs. Never give up hope. Never give up on your kids. Love them as they are. They would always find a way when we believe in them. Our kids are our heroes,” Haddad added.