Creating an alternative rehabilitation system for children wearing a cochlear implant in Romania

My story begins with my daughter Sonia. She was born in 2007 with an extremely rare and complex heart defect. We flew around the world to find a solution for her heart to function as close to normality and we found it. In 2008 in Boston, on the day she was discharged from the hospital with a fixed heart, we discovered she is profoundly deaf. Acquired deafness from the many medical procedures and medication she had for supporting her heart function in her first months of life. Right now she is a perfectly normal 9 years old and her hearing is provided by a cochlear implant. The journey to normality was not over yet. Cochlear implants provide only the access to sound, but the brain needs to get used to decoding the sounds it receives. So going down that tortuous road and understanding how a late diagnosis can make auditory-verbal rehabilitation much harder, I started thinking about solutions for children who are already diagnosed and also for those that will to be born and possibly suffer from congenital hearing loss.

In 2013 I started an NGO - Asociatia Sonia Maria, willing to get involved in providing solutions for children with hearing loss and congenital cardiac diseases. I counselled families of children born with congenital complex cardiac diseases in order to access health care abroad. I helped them transfer their children to a cardiac centre in Munich, Germany where their health issues met the needed medical care. Parents reached out to me for advice and support, I helped them contact the clinic and maintain the contact with medical staff abroad. Other times I just I brought medication that was not available in my home country or found a connections in countries where needed medication was available and managed bringing it to Romania. This saved my daughter’s life at birth, and other children further on. At times I flew with families to Germany, discussed with doctors and supported them during the hard times their children underwent complex surgeries. Once we started dealing with hearing loss, it broadened my area of issues that needed to be addressed.

In 2015 I opened Casa Koala, the first family centred auditory-verbal centre in Romania, with the help of an Australian speech therapist. Viktorija McDonnel relocated in Bucharest for two months to help us kick start the project. In Romania there is no other rehabilitation centre especially designed for children with hearing loss wearing cochlear implants. We hold individual weekly sessions in the centre and for children living in remote areas we provide tele practice. Children and their families have the opportunity to access this program especially created to help families of deaf children on their road to learning to listen and speak. With a team of three people we try to change the way in which families relate to therapy. We are trying to build a community of people who are informed, counselled and supported on their path to speech rehabilitation.

Having access to information and seeing how much harder it is for children to acquire speech when they are diagnosed at a late age, I am making efforts to create a Bill that will implement mandatory neonatal hearing screening in all the maternities in Romania. This will mean that all the children born deaf will be diagnosed at birth and they will have the best chance in receiving the proper medical care, the devices that will give them full access to sounds and further on a fair chance in rehabilitation.

That is a brave innitiative

Congrats, @Oana_Geambasu  !

I would like to know more about it. How do the families learn about your NGO? Does the medical stuff tell them or else?

How many children benefit from cochlear implants in Romania, is it something the state offers or do the parents search for private solutions?


Welcome, @Oana_Geambasu !

Great initiative. I am curious about your community: is the community actually delivering part of the therapy? Or is it the therapists delivering the therapy, withthe community playing the role of informing the families seeking therapy?