Youna was at work when her water broke at just 26 weeks and 2 days. After travelling nearly 50 kilometres to the nearest hospital (Wollongong Hospital), and with her baby’s heartbeat dropping, it was time to deliver quickly via emergency C-section.

Sarinnah was born on the 13th of February, 2022 weighing a tiny 830 grams. It is now clear why Youna’s waters had broken so early, Sarrinah had tangled herself up in her umbilical cord and was in distress.

Mohammed and Youna knew instantly that there was something special about their baby girl. The couple, hailing from Bangladesh, were surprised to discover that Sarrinah was born with very fair skin, hair and eyes. Following an eye check at 34 weeks, it was confirmed that Sarrinah had albinism, a rare genetic condition characterised by the decreased production of melanin in the skin, hair, and eyes. Blood tests taken a week later are still yet to confirm exactly what type of albinism Sarrinah has. 

Dr Srinivas Bolisetty, Senior Neonatologist at The Royal explains that albinism is extremely rare - “Approximately 1 in 20,000 babies are born with albinism….except for vision problems, most people born with albinism are just as healthy as anyone else.”

Royal staff, including nurses, midwives and neonatologists are well equipped to treat babies presenting with a variety of rare conditions, including albinism.

Sarrinah is currently residing in The Royal’s Newborn Intensive Care Unit where she receives around-the-clock care from the team of dedicated NICU nurses and clinicians. Sarrinah is growing bigger and stronger every day and her parents cannot wait to take her home to her family and friends in Wollongong. 

“The most exciting part will be introducing her to the world and people who love her and us. Everyone is waiting for her to come home healthy and well. My mum from Bangladesh came here on 21st March and is still waiting to see her. My in-laws will come once she comes home.” - Sarrinah’s Dad, Mohammad. 

Every day Sarrinah’s parents make the nearly 200km round-trip from Wollongong to The Royal to sit by their baby girl’s bedside. “Sarrinah being able to sleep in her own cot would be something I would love. We look at the cot every night and tell ourselves ‘soon she will be here’.”

Donations to Heart for Her before June 30 enable the incredibly dedicated specialists at The Royal to provide life-saving care and treatment to more babies like Sarrinah.