Eisa’s story: The trials and triumphs of meningitis hearing loss Eisa, my first born, so tiny and so beautiful. But things didn’t go as I had planned in the many months of carrying him. After Eisa was born by C-section, he was kept in special care due to some complications. A week later once I was discharged, I had to come home empty handed, without my beautiful baby boy. I remember sat perched on the side of the bed, looking out of the window at the other proud mums and dads with beaming smiles, as they carried their own bundle of joy to the car to take them home. The week after was difficult, and it all took a turn for the worse on the Saturday night. We were just saying our good night to Eisa when something didn’t seem right. Once the staff had taken notice his condition deteriorated rapidly. He was rushed to Great Ormond Street Hospital, thinking that he had twisted bowels and had to operate, before the surgeon operated they discovered rods in his blood (later we understood this as e-coli septicemia) he was taken to theatre, we were given no guarantee he would return, as explained by the staff. Fortunately, he did return, the next 48 hours were very difficult and we were living hour by hour. Thankfully, Eisa pulled through and 10 days later he was sent back to the local hospital to finish his course of in vitro antibiotics and establish feeds. It was here when he had his new born screening done, which he failed. They told us not to worry and that it could be ‘gunk’ in his ear that may be blocking the sounds and that he would be re tested at a later date. For me, the implications of this did not register. We were just so happy and relieved that the doctors had started talking about Eisa going home. At 46 days old I was able to experience that joy of bringing our baby home. At 3 months Eisa was retested and he failed the hearing tests again. Eisa was so alert visually that we never gave the first failed test a second thought. But once the second test confirmed the first we just couldn’t understand, how and why. I remember the doctor in the hearing clinic asking us if Eisa had meningitis and that if he had been given the antibiotic gentamicin. We had the conversation as to why she would ask such questions, and then slowly started piecing the implications together. It was only once we got home and looked through Eisa’s discharge notes that we discovered he had been fighting meningitis. From the point Eisa got his hearing aids, I was on a mission, I talked none stop to Eisa, about everything. Everything we went past, everything we touched, everything we saw. The implications of being severely deaf sunk in further when we started looking for a pre-school to send Eisa. He was so quiet and held back much more than he did when the two of us were at home, in our quiet, acoustically adjusted home with only me chatting and singing away. We felt so sad and confused as to how we could help Eisa. I used to take Eisa to baby signing prior to our pre school search and he enjoyed it very much, however, it was clear that the school and friends wouldn’t really sign with him and gestures only came along if they were a natural part of conversing with 2-3 year olds. And then one day things changed. I’d just dropped Eisa off and I had witnessed another moment of him not being able to hear, and having felt the helplessness yet again. Another mum whose boy had just joined the nursery mentioned AVUK to me. I came home and did a search for it, I could not believe no one had told me about this before. I called them up and arranged a meeting. I managed to convince my husband to take time out of his work and drive us to their offices in Oxfordshire, it did not take much convincing. It was so refreshing to finally speak to someone who shared our desire to unlock the potential in Eisa. Instead of being met with, ‘no sorry he can’t…..’, ‘no sorry he won’t be able to….’, ‘no sorry he can only…’. We heard the words, ‘yes he can…’, ‘yes he will…’, ‘he can reach his potential and even exceed it’. As soon as we got home from the initial meeting we signed up for AVT sessions. Each and every session was hard work, but worth everything to hear Eisa constructing new sentences and saying new words, being able to answer questions without the need for signs or gestures. Eventually at the age of 4 we went down the CI route. AVUK were amazing and, with the support of Louise, helped prepare Eisa and set expectations of before and after the implant. I remember in one of the CI assessment appointments the consultant saying, ‘we can implant your child, but the success of the implants depends on what you do with it’. AVUK has given us the skills to not only unlock Eisa’s potential, but also to maximize the use of his CI. Eisa can now have a conversation with unfamiliar people, without looking to me for clarification. He can run into the playground and ask his friends what game they are playing and what the rules are. He can stand up in front of parents and say his lines loud and clear in class assemblies, although his singing isn’t going to win him any awards any time soon. AVUK has allowed us to dream again, they have provided us with the foundation for Eisa, to enable him to do whatever he chooses to do and achieve his aspirations.