Our Story

In May 2010 we had a beautiful baby boy. He was perfect in every way and to us, still is. He failed numerous hearing tests and was eventually, at almost 6 months, diagnosed with a moderate to severe hearing loss and fitted with hearing aids on both ears. In January 2015 he fell and hit his head. After an uneventful evening at A&E he went to bed later than usual but, we thought, fine. He woke up profoundly deaf. 2 months later he was fitted with cochlear implants which he has taken to beautifully. He has excellent speech and is a clever and kind little boy.

In March 2012 we had a beautiful baby girl. She, at just 5 weeks, was diagnosed with a severe to profound hearing loss. At 11 weeks she was fitted with two hearing aids and a month before her second birthday she had surgery for cochlear implants. Unfortunately, during the surgery she lost her vestibular system and so all of her balance. She has re-learnt to walk and run and climb using only her sight and her touch. She’s a freaking powerhouse of determination and nothing is going to stand in her way.

They are deaf because of a genetic syndrome inherited from myself and their father. No-one in our families are deaf so the gene has lay hidden, secret, for generations. There’s a 25% chance that any child of ours will be deaf. I cannot tell you my heart ache when it happened twice. Or, when, in November 2014 we had a third baby who can hear. She is a carrier so may well one day, like us, have deaf children of her own.

I have always baked my way through stress; exams, break ups, unrequited love. And so, you can imagine, I baked my way through my babies’ first weeks, months and years. As a result they loves to cook. So now we bake together. Coping with deafness and all the other obstacles life insists on throwing at us, one cupcake at a time.

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4 thoughts on “Our Story

  1. I think I’ve written to you before. Sometimes I like reading posts about deafness because I can relate to them. Sometimes I avoid reading them because I’m in denial that our 16 month old is deaf. However I have just read all your posts because I was feeling strong, or maybe sad, anyway whatever it was I related to every single one. Apart from the fact that you have had to go through it twice. That is so unfair. Like you I’m in Holland and coping pretty well but every stage brings its own angst. Until last week I was anxious that Angus wasn’t walking but now he is so I’m back on to deaf angst regarding speech. It’s so lovely to meet you even if only virtually as I know no one else with a moderate / severe baby who is being treated with hearing aids. Most people we have met are on cochlear lists and a couple so mildly deaf I hate them for thinking they have a problem. At our level I guess once the cochlear implants have happened the severe hearing aided children will have the worst hearing of anyone but I don’t really know that as I can never tell what is to do with budget and what is to do with what is best for our children. Do you? Six months seems an awfully long time to wait for diagnosis. Has he caught up with his hearing age? How old is William now? I admire you learning sign language. I went to classes but haven’t learned enough myself to teach it to Angus. However we do have two older children so the decibel level in our house is higher than the average home! Thank you for sharing everything. I love your blog.

  2. i’m glad i’ve come across your blog. The experience of pendred’s is very diffiernt for each person but I’m sorry that your child(ren) have such significant hearing loss. I’m now 53 yrs old and had pendred’s from birth but wasn’t diagnosed until 4 yrs by which time i was quite badly growth and mentally retarded. My hearing loss is moderate-ish and i wear bilateral aids but can hear 121 in quiet surroundings. You may need to get your children monitored for hypothyroidism as they grow older because it sometimes doesn’t show up unitl puberty or early adulthood adn in one case a 42 yr old – although not sure if the guthrie heelprick test at birth would have showed it up. jsut be aware of symptoms of hypothyroidism.

    I’m doing doctoral level studies and am very physically active despite being a cretin for 4.5 yrs so just goes to show that everything is possible!

  3. I just discovered your blog and am looking forward to reading all of the posts. My son was identified as deaf through newborn screening tests. It’s “just one of those things,” not something anyone has been able to explain. I suppose it must be genetic, but nobody has figured out which gene! His loss is sloping, moderately-severe to profound (120+ dB). He got his first hearing aids when he was 4 months old, and we started learning sign language in addition to doing speech therapy. We’ve had our share of struggles, but now (age 8, just finished grade 2) he is doing really well! He loves reading, math, baseball, and Pokemon (ugh). He is doing great at school. He goes to ASL camp in the summer to keep up his sign language, but will also talk your ear off! Usually explaining Pokemon at length, sigh.

    Just wanted to give you a postive story! You and your family have wonderful adventures ahead!

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