Tasneem was born three weeks early with an inherited condition called congenital adrenal hyperplasia (CAH), a gene mutation that robs the body of its ability to produce cortisol, which the body needs to deal with stress. She was just shy of 4 ½ pounds – a “peanut,” mom says. Her pint-size would earn her the nickname ‘Nemo’ after the small yet mighty Disney fish and if anyone could cross an ocean by themselves, it’s this dynamic girl.
Nemo has had a complex medical history stemming from (CAH) and almost from birth she has been cared for by the Endocrine team at the Alberta Children’s Hospital. Her mutation inhibits physical growth and affects the body’s ability to retain sodium. Almost since birth she has been receiving cortisone to help her body grow and protect itself, and fludrocortisone to help her body retain sodium. Maintaining the right cortisol dosage is a delicate balance that requires constant vigilance by mom and everyone on Nemo’s Endocrine team. Too much cortisol will stun her grunt; too little and she will grow too much. The imbalance also affects her blood pressure and ability to absorb nutrients and maintain appropriate blood sugar levels. When she does grow, her dosage needs to be recalculated to avoid dangerous shocks to her system. “It’s a life-and-death balancing act,” says mom. Because cortisol maintenance can make bones brittle, experts are monitoring her bone growth. She is also taking daily injections of growth hormone to help her grow.
Nemo has found a medical ally in her older brother, Radwan, who was also born with the gene mutation, and has become an engaged, compassionate force in the hospital. Nemo likes to tell doctors that she will develop a way to administer meds through pores so kids don’t have to feel any pain from needle pokes, and she is eager to volunteer to help soothe other kids who might be on challenging medical journeys or who just need a friend. She wants to become an anesthesiologist when she grows up.
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Mom is immeasurably proud of her empathetic, engaged “trooper” who is always looking for ways to help other kids. Nossaiba says the Alberta Children’s Hospital is their “home away from home” and she is grateful for everyone’s commitment to family-centred care. They have come to regard some of Nemo’s Endocrine team members as part of the family.
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