2024 Early Hearing Detection & Intervention Conference
March 17-19, 2024 • Denver, CO
3/18/2024 | 10:05 AM - 10:30 AM | We’ve come a long way: Amalia’s CHARGE syndrome journey | Mineral Hall D/E
We’ve come a long way: Amalia’s CHARGE syndrome journey
Amalia was born via C-section at 38 weeks. She was immediately whisked away to the NICU due to respiratory failure. When we first met her, there was a suspicion that something was not typical. She had a facial droop and external ear abnormalities. She began aspirating and needed feeds through an NG tube. She went through numerous tests and workups, finding multiple medical issues that we would need to address. After putting the pieces together, we were told that she may have CHARGE syndrome. As we were focused on all her other medical issues, we didn’t learn about her hearing loss until she was almost 5 weeks old. We were called the evening before her G-tube surgery to get consent from the ENT for a sedated ear exam, this being the first time we heard anything about her failing the hearing screen.
Amalia spent 42 days in the NICU, between the hospital where she was born and our local children’s hospital. When we were discharged, we spent a month having multiple ABRs to qualify the degree of her hearing loss. She was 2 months old by that time, so she was hard to keep asleep for the ABRs. She and I drove all over the Philadelphia area for multiple ABRs. As a mom of a newborn medically complex child, this was extremely overwhelming and stressful. Finally, after 3 visits, the audiologists had enough information to feel confident in her degree of hearing loss.
It has been an emotional but rewarding journey our family has gone through since Amalia joined our family. Today, she is a thriving and happy 2 ½ year old. I would like to share our experiences and how far we have come.
- 1. Participant will be able to better prepare a parent for the evaluation of hearing loss.
- 2. Participant will be able to support families in their hearing loss journey.
- 3. Participant will be able to recognize challenges that parents of medically complex children face in the early identification of their hearing loss.
Presentation:
3478265_16177KateRagona.pdf
Handouts:
3478265_16177KateRagona.pptx
Transcripts:
CART transcripts are NOT YET available, but will be posted shortly after the conference
Presenters/Authors
Kate Ragona
(Primary Presenter,Author), parent, kateragona18@gmail.com;
Kate Ragona is a mother of 3, a wife and a critical care physician assistant. She and her family live in eastern Pennsylvania. Her daughter Amalia was born with CHARGE syndrome and Kate has been excited and eager to share their experiences and journey.
ASHA DISCLOSURE:
Financial -
No relevant financial relationship exists.
Nonfinancial -
No relevant nonfinancial relationship exists.
AAA DISCLOSURE:
Financial -
No relevant financial relationship exists.
Nonfinancial -
No relevant nonfinancial relationship exists.