Hope dies last: the story of a strong woman and mother of children with hearing loss
12. February 2018
We were blessed with our first child in 2006. I had a normal pregnancy and birth. It was only at two years, we noticed that she wasn’t developing much speech. I compared her with other children of the same age and was asking around but people reassured me that there was nothing to worry. So I enrolled her to a playgroup. Two weeks later her teacher told me that they think she did not hear. I was in panic and my husband made an appointment for a test. The weekend before the appointment we noticed that she did not respond to many environmental sounds which made me worry.
Lost with little information and lots of advicesAt the appointment, the pediatrician did some basic sound tests and referred us to an audiologist at the hospital. I did not know what an audiologist is but we went there for an auditory brainstem response (ABR) test where with hardly any information our daughter was put asleep. When she woke up, the audiologist broke the news quite casually: she was severe to profoundly deaf. Again there wasn’t a lot of explanation, just the advice to buy hearing aids. I was shocked while my husband tried to be strong. I asked myself what happened? Did we cause it? We informed our relatives and their responses were quite something: ”This will sort itself out. Don’t get her hearing aids; they will mess up her ear drum. Take her for prayers, take her for a second opinion. We went to another ENT who confirmed the results.
A glimmer of hope on the horizonWe managed to raise funds – the insurance only contributed little, and went for the fitting of analogue hearing aids which weren’t the best solution. Our daughter struggled with the whistling of the hearing aids. Another struggle was to find a speech therapist. The cost was too high and we felt we were not advised well and so we started to look online and were overwhelmed by the good information from developed countries. On www.hear-the-world.com I read about new digital hearing aids from Phonak and I took a step of faith and wrote them to seek help. We were so happy when Ora Bürkli responded that they were willing to support my daughter with hearing aids at a subsidized rate.
The end of loneliness started with sharing with othersThere were many times on this whole journey, I struggled, I felt alone and I felt intimidated by the constant questions from people around me. There were days, I hid myself from my daughter so she couldn’t see my tears. I thought, if the situation is that hard for me, how must it be for her? I worried about her future. I promised I would do everything I could do for her. So during her therapy sessions I tried hard to learn to best support her at home.
I often wondered how other parents would cope with the same situation, and so one day I asked our audiologist to pass my contact details to other families to organize a meeting with them to share a meal, let the children play together and to exchange. When we first met I noticed that some of the children did not wear their hearing aids. The parents feared their children would be stigmatized, so they choose to hide them when in public. Other topics that came up were:
- Most of the children’s hearing loss was only identified when they were five or six years old due to the lack of newborn hearing screenings;
- Most of the children were fitted with hearing aids that were hardly functioning;
- Speech therapy and schooling cost were too high for the parents;
- Many parents had no to little information about how to assist their children;
- In the African society hearing loss is considered a taboo, so children with this disability would be considered ”deaf and dump”;
- Due to the taboo, sign language was not an option for many, as everybody would immediately see the disability.
From sharing to caringThese were only a few of many stories they shared at the meeting and in the evening back home I was thinking about what could I do to assist them. So we run a school in Nairobi trying to mainstreaming children with hearing loss. The start wasn’t easy. Some parents were our biggest obstacle, as they did not want their “normal hearing children” to become integrated with ours – again due to the fear of being stigmatized. But today I am proud of what we achieved, although there is still much to improve.
But the struggle went on…In the meantime, everything seemed to be fine until 2010, when I became pregnant. It wasn’t planned at all and I was worried about my baby to be born with the same disability. In March we were blessed with a healthy boy. As there was still no newborn hearing screening, we had to wait until he was two years old to find out that he was severe to profoundly deaf. My world shattered. Why my children? My in-laws sidelined with the kids but my husband supported us and was an amazing father. Sadly he died in a road accident in November leaving me alone with three children.
In November 2016, the children home contacted me. They had a little boy with hearing loss and needed guidance on how to assist him. I decided to take him to our home. It has not been easy but he is making slow progress and we are celebrating every small milestone. Many people thought that I am crazy to take on another child with hearing loss but he and all our children are a blessing.