11 July 2023
The estimated occurrence of Kagami-Ogata Syndrome is less than 1 per 1 million! At birth Qi Qi, pronounced ‘Chi Chi’, had a 2% chance of survival.
Qi Qi’s journey into this world was not an easy one. She arrived prematurely at 35 weeks and 1 day, weighing a delicate 2.36 kilograms. From the very beginning, Qi Qi faced numerous health challenges. She was intubated and placed on a ventilator in the Paediatric Intensive Care Unit (PICU) for eight long days, with nasogastric feeds providing her with the necessary nutrition for growth and development.
Her parents vividly remember the challenges they faced in obtaining a proper diagnosis for her rare condition. One doctor stood out, for listening attentively to their concerns and advocating for further tests, leading to the eventual identification of Kagami-Ogata Syndrome.
Qi Qi was the first Irish baby to be diagnosed with Kagami-Ogata Syndrome. Kagami-Ogata Syndrome means that Qi Qi was born with a double Y chromosome and no X chromosome. This syndrome causes many respiratory problems, abdominal wall defects, skeletal abnormalities, swallowing problems, developmental delay, intellectual disability, and many other life-threatening problems.
She spent six long months in the hospital before finally being able to go home to Limerick for her first Christmas. Her resilience shone through, and with the help of her dedicated Resilience Healthcare nursing team, she has only returned to the hospital once for an infection and stomach bug, from which she recovered swiftly.
Looking ahead, Qi Qi's parents envision a bright future for their beloved daughter. They eagerly anticipate her attending school, as they see her growing bored at home and yearning for new experiences and exploring the world around her.
Reflecting on their journey, Qi Qi's parents expressed gratitude for the kindness displayed by the Resilience Healthcare nurses who support them. The nurses not only provide excellent medical care but also offer valuable guidance and empathy throughout their challenging times.
Qi Qi's loving nature and vibrant personality touches everyone she encounters. She has built strong bonds with the nurses who care for her, finding joy in meeting new faces and making connections.
When asked about advice for parents facing similar difficulties, Qi Qi's parents emphasised on doing their best and not expecting perfection. They acknowledged the learning process that comes with caring for a child with complex medical needs, emphasising the importance of seeking support and cherishing the small victories along the way.
Qi Qi's story serves as a testament to the strength, love, and resilience that can be found in the face of adversity. With the support and determination of her family and the dedication from her Resilience Healthcare nurses, Qi Qi continues to overcome obstacles and bring happiness to those around her.
Carol Bergin – Nurse Manager