Ava’s Story

Ava’s first hours of life were unexpectedly challenging. Within 12 hours of birth Ava was experiencing abnormally rapid breathing and discolored patchy skin. An echocardiogram revealed she had multiple congenital heart defects as well as Bronchopulmonary Dysplasia (BPD), a form of chronic lung disease. This came as a shock to Ava’s family since none of her routine ultrasounds or tests detected anything.

The next morning, at just two days old, Ava was transported to Nationwide Children’s Hospital, where she would stay for the next 111 days. During her time there, her family almost lost Ava several times as medical staff worked feverishly to treat her multiple systems that were in havoc.

“It was incredibly agonizing to see our daughter tethered to all the tubes, wires and machines as her life hung in the balance. The uncertainty and emotional pain was unbearable at times,” says Stella.

Soon after being transferred to Nationwide Children’s, Ava’s neonatologists and cardiologists began putting the pieces together in determining her diagnosis. They suspected some kind of syndrome due to the multiple and complex issues and a referral to genetics confirmed that Ava had CHARGE syndrome. CHARGE syndrome occurs as several anomalies that are commonly found together. In Ava’s case, they are heart defects, growth and developmental delays and profound bilateral hearing loss.

Finally, on January 27, 2009, strong little Ava was well enough to go home with her family. Her cute little pink bedroom that Ava’s mom had finished decorating two days before her birth was now overrun by medical supplies and equipment.

“I swallowed my tears and began organizing all the paraphernalia in cute little baskets and trained myself to care for a child with so many medical needs. We eventually grew accustomed to the weekly doctor and physical therapy visits and several nurses coming in and out of our home,” says Stella.

Today, Ava is 10 years old and has come an incredibly long way. She no longer needs oxygen, blood pressure medications or continuous G-tube feeds. To help with her hearing loss, Ava has cochlear implants. While her speech has never developed, she communicates most of her needs through sign language. Ava has around 11 specialists who care for her, as well as therapists and social workers.

“We pray every day that Ava grows up to live a happy and productive life but for now, we take one day at a time and count our blessings that we were and still are under the care of such an amazing hospital,” says Stella.

Patients with complex problems need services that are holistic, coordinated, continuous and family-centered. The Complex Health Care Program at Nationwide Children’s Hospital helps patients achieve the best possible state of health and quality of life.

Ava is a caring, sweet girl who enjoys school, playing with her friends, siblings and her toys. She is quite keen on animals, with an impressive collection of stuffed animals and love for her two dogs – Bennet the Boston Terrier and Brubeck the Pug.

https://flutter.nationwidechildrens.org/wp-content/uploads/2018/11/Ava-.jpg

Ava’s first hours of life were unexpectedly challenging. Within 12 hours of birth Ava was experiencing abnormally rapid breathing and discolored patchy skin. An echocardiogram revealed she had multiple congenital heart defects as well as Bronchopulmonary Dysplasia (BPD), a form of chronic lung disease. This came as a shock to Ava’s family since none of her routine ultrasounds or tests detected anything.

The next morning, at just two days old, Ava was transported to Nationwide Children’s Hospital, where she would stay for the next 111 days. During her time there, her family almost lost Ava several times as medical staff worked feverishly to treat her multiple systems that were in havoc.

“It was incredibly agonizing to see our daughter tethered to all the tubes, wires and machines as her life hung in the balance. The uncertainty and emotional pain was unbearable at times,” says Stella.

Soon after being transferred to Nationwide Children’s, Ava’s neonatologists and cardiologists began putting the pieces together in determining her diagnosis. They suspected some kind of syndrome due to the multiple and complex issues and a referral to genetics confirmed that Ava had CHARGE syndrome. CHARGE syndrome occurs as several anomalies that are commonly found together. In Ava’s case, they are heart defects, growth and developmental delays and profound bilateral hearing loss.

Finally, on January 27, 2009, strong little Ava was well enough to go home with her family. Her cute little pink bedroom that Ava’s mom had finished decorating two days before her birth was now overrun by medical supplies and equipment.

“I swallowed my tears and began organizing all the paraphernalia in cute little baskets and trained myself to care for a child with so many medical needs. We eventually grew accustomed to the weekly doctor and physical therapy visits and several nurses coming in and out of our home,” says Stella.

Today, Ava is 10 years old and has come an incredibly long way. She no longer needs oxygen, blood pressure medications or continuous G-tube feeds. To help with her hearing loss, Ava has cochlear implants. While her speech has never developed, she communicates most of her needs through sign language. Ava has around 11 specialists who care for her, as well as therapists and social workers.

“We pray every day that Ava grows up to live a happy and productive life but for now, we take one day at a time and count our blessings that we were and still are under the care of such an amazing hospital,” says Stella.

Patients with complex problems need services that are holistic, coordinated, continuous and family-centered. The Complex Health Care Program at Nationwide Children’s Hospital helps patients achieve the best possible state of health and quality of life.

Ava is a caring, sweet girl who enjoys school, playing with her friends, siblings and her toys. She is quite keen on animals, with an impressive collection of stuffed animals and love for her two dogs – Bennet the Boston Terrier and Brubeck the Pug.

Share Ava's Story

Comments

More Stories

  • Madison I.

    Age: 20 Years | Crohn's Disease

  • Gabe .

    Ependymoma

  • Izabella S.

    Age: 6 Years | Small bowel atresia

  • Carter R.

    Age: 7 Years | Anorectal Malformations / Imperforate Anus

  • Olivia C.

    Age: 13 Years | Hearing Loss

  • CJ .

    Dextro-Transposition of the Great Vessels (d-TGA)