Patient Story: Amelia Turns Five!

Amelia, a Family First Homecare patient, has lived a lot of life in her five years and remains a happy, energetic little girl. Homecare has allowed Amelia to stay home and live her life alongside her family and peers.  

Amelia was diagnosed with critical complex congenital heart defects in utero at about 23 weeks gestation after abnormalities were found during the ritual anatomy scan. All prenatal care was transferred to The Children’s Hospital of Philadelphia. There she was born in the Special Delivery Unit on August 2, 2018.

At just four days old, little Amelia underwent her first open heart surgery, complicated by post-op seizures caused by a small stroke. At three weeks old, her family brought her home with a nasogastric (NG) feeding tube (a special tube that carries food and medicine to the stomach through the nose) and a strict monitoring program.  

The day she turned 3 months old, her family took her in for her second open-heart surgery. Unfortunately, this surgery came with many unexpected complications, including 11 days on VA-ECMO (veno-arterial extracorporeal membrane oxygenation, a form of temporary support for acute cardiorespiratory failure), cardiogenic shock, emergent reintubation, severe heart failure, inability to extubate, and a “guarded” prognosis. Eventually, after many terrifying days, difficult discussions, and more procedures, Amelia went home with a tracheostomy, dependent on a ventilator 24/7, and requiring care around the clock.  

Since then, Amelia has overcome many challenges. She has grown and surpassed expectations in so many ways. She is off her ventilator during the day, running along with her big brother and going to school with her peers.  

“Amelia loves dancing and all things pink, sparkly, pretty. She is silly and witty, full of utter joy, and she has an inexplicable way of drawing others to her. She is truly radiant. Over the years, there have been both triumphs and setbacks, countless procedures, hospitalizations & illnesses, good days & hard days. She’s taken all of it in stride & always comes out with her cheeky, dimpled little grin,” says Amelia’s mother. “The future for Amelia is uncertain. There will be more hurdles to face, both big and small. She has another open-heart surgery on the horizon, but today she is miraculously here, happy, spreading her infectious joy everywhere she goes.” 

We are honored to be part of Amelia’s story. Our incredible team continues to support her medical needs, allowing her to be the excited little girl she is – dancing and playing with her friends and family.  

“I truly believe this is the magic of homecare. It makes me so very proud of what we all do at Family First to increase the quality of life for these kiddos.”

Christina, Director of Nursing at Family First Homecare

Happy 5th Birthday, Amelia!