Having a child with hearing loss has many challenges and many rewards. For about 40% of families who have children with hearing loss there are other conditions or syndromes that also impact on the child’s development. As there are many more “unknowns” for children who have additional needs, the challenges for these families are considerable. We are grateful to Emily, Sam’s wonderful Mum, for her generous contribution below.
“ Sam was born with a virus called congenital Cytomegalovirus (CMV). Unbeknownst to us, until he was born, he most likely contracted this somewhere between 16 and 18 weeks. There were no signs of the virus in the 3 ultrasounds that we had between 20 and 40 weeks. We thought we were having a “normal” child. The effects of congenital CMV vary from child to child. For Sam, this meant he was born with an infected spleen and liver, had brain damage, and was profoundly deaf. At 3 weeks old, he was discharged from intensive care, and we began our journey with varying medical professionals.
We contacted EEP, met Rita and Lyn when Sam was about 4 weeks old. I first came to the parents group when Sam was about 7 weeks old. I can’t describe how welcomed I felt at that first group, and how much EEP means to us as a family since that first meeting. Looking back, I was dealing with much of what was going on with Sam on the surface, because logistically, with the amount of appointments that were being booked each week, I had to deal with it. I don’t think reality had really sunk in. The future was, and still is in some respects, unclear. Dreams for our second child were now becoming very different to those for our first.
I was diagnosed with post natal depression when Sam was about 4 months old and can honestly say that the EEP parent group was an integral part of my therapy and road to getting back on track. And today, 20 months on, I don’t miss Tuesday mornings with ‘the girls’ if I can really help it!
Sam’s individual sessions with Lyn and Rita have challenged and progressed both him and me. I really feel that we have been supported through every stage in his journey so far, from implant surgery, to signing, to dealing with his challenging older sister! Sam is now 21 months old. He has bilateral cochlear implants. His hearing is above age appropriate. He has cerebral palsy which affects his oral motor skills but he signs and says some words.
He definitely knows what’s what, who’s who and makes his needs known! Like I said, his future does still remain unclear, but Sam is a delight to us and those around him and we wouldn’t change history for anything. The staff, volunteers and other parents at EEP make it a truly special place, and it is our family who are the blessed ones to have the opportunity to be a part of it on Sam’s journey. ”