Cochlear Implants: The Big ‘Switch On’

After Harry had his cochlear implant operation I found myself flooded with messages of congratulations that Harry could now hear. Unfortunately, of course, this wasn’t quite the case just yet.

The operation was just the beginning and without the external hardware Harry still wasn’t able to access sound.  It took a while to explain this to people,  and on top of it was the fact we had no idea how successful the op would be until his “magic ears” were activated. Continue reading

Support for parents of deaf children

Although we personally don’t refer to deafness as a disability it can be seen as one and does come with its own challenges. Being a parent of a deaf child requires a little more time, patience and understanding of what your child may be going through.

First, coming to terms with your baby being diagnosed with hearing loss can be a highly emotional and stressful time. It can bring fears, questions and a sense of loss, especially if it comes out of no where, like it did for us and Harry. When we found out about Harry’s hearing loss, the first thing we did was turn to the internet. We headed straight for forums for parents of newly diagnosed deaf children to try and understand what this meant for us as a family. To say it helped would be an understatement. I immediately felt a huge sense of hope as I connected instantly to each person’s story. It was almost like we were part of an exclusive group.

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Cochlear implant surgery: Preparing yourself and your infant

One of the biggest considerations in our decision for Harry to have cochlear implants was, of course, the surgery. The process can take as long as 8 hours for bilateral implants and for a baby that is a very long time to be under anaesthetic.  There was no doubt in our minds that we wanted Harry to have cochlear implants so we knew the surgery was something we needed to get our heads around pretty quickly.

On the lead up to the operation I gathered as much information as I could about the surgery and what it involved.  I asked every question that popped into my head and Googled away until I felt satisfied that I knew what to expect when putting a young infant through this procedure. I asked how long the operation would take, if I could stay with him until he was asleep and how he would would feel afterwards.  I was also informed about an extra vaccination that Harry would need to have prior to the operation that I hadn’t been aware of before, as meningitis is one of the risks of this type of surgery.  Although the risk is very small it was good to know that he could have an injection to help prevent it happening.  There is some more information about the vaccination below.

I felt like if I knew as much as I could then I would be prepared for how I would feel during the surgery and how he would be feeling once it was done and he had come around from the anaesthetic, good or bad.

I found out that cochlear implants are routinely straightforward, typically taking two to four hours. The surgery is minimally invasive, and performed thousands of times per year across the world. In fact, children usually go home the same or very next day and resume their regular activities within a couple of days. Patients spend additional time in the preparation and recovery areas because the procedure is done under general anesthesia.

Some extra information from our cochlear implant provider, Advanced Bionics:

Cochlear implant candidates and recipients should consult their primary care physician and implanting surgeon regarding vaccination status for protection against meningitis. Meningitis is a known risk of inner ear surgery and candidates and recipients should be appropriately aware of this risk.

Because children with cochlear implants are at increased risk for pneumococcal meningitis, the Centers for Disease Control (CDC) recommend that they receive pneumococcal vaccination on the same schedule recommended for other groups at increased risk for invasive pneumococcal disease. Recommendations for the timing and type of pneumococcal vaccination vary with age and vaccination history, and should be discussed with a health care provider.

If you want more information about what to expect during a cochlear implant surgery and initial stimulation, you can download this PDF

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Harry gowned up for surgery

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Learning Sign Language with a Baby or Toddler

We started learning sign language as soon as we found out about Harry’s hearing loss.

Even though Harry has a cochlear implant and can hear our voices, we wanted him to know the basics of sign language for the future. Not only to better communicate with him, but also to be a part of the deaf community. He is still a deaf person after all, and he may very well have deaf friends who only use sign language to communicate.

Not only is sign language useful for children with hearing loss, but its also great for hearing children to learn as well. Even when they are very young, a baby’s motor skills and ability to make hand gestures are far more developed than their ability to speak, which makes it really very easy for them to learn the basics of sign language. You will be so shocked at how fast a little baby can start to copy different hand gestures, eventually realizing they can use their hands to tell you what they need! Imagine if your baby could tell you what they want via signing instead of screaming and wailing!

With help from our Teacher of the Deaf, Harry he had a whole range of signs he was using to communicate with us by the time he was around 9 months old.

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Holiday inspired Hearing Aids & Cochlear Implants

It’s the most wonderful time of the year!

I absolutely adore Christmas time and everything involved with it.  Being in the UK, our traditions include decorating the front room with garlands and fairy lights, wearing tacky Christmas jumpers and munching on pigs in blankets!

This is Harry’s second Christmas, but this year is his first “hearing” one and I aim to make it special!  It’s got me thinking about how to get Harry more interested and involved in the holidays, so it’s time to start some new traditions, and one of those is going to be decorating Harry’s cochlear implants! Continue reading

A lesson on baby’s first hearing aids

As mentioned in my Finding out our Baby was Deaf post, Harry received his first set of Phonak hearing aids when he was just 7 weeks old. It was quite a scary thought that our little baby would have to wear equipment on his ears, and that we, as his parents, would have sole responsibility of managing them. Thankfully, our local Audiology team was fantastic.  Daniel, our audiologist, made us feel completely at ease, and was so gentle while he took Harry’s first ear impressions for his molds.

When it came to choosing a color for his hearing aids I really wanted him to have a cute baby blue. My partner, Scott, was a little apprehensive about having a colored device, as he didn’t want them to stand out too much and for people to stare. But Harry had such a bald little head, and whatever he wore would have been on show! So, I managed to convince him that blue was the way forward. Continue reading

Finding out our baby was Deaf

We were still getting used to the fact we had a mini human who was awake most of the night when we found out that Harry was deaf. He was just 7 weeks old when he failed the Newborn Hearing Screening.

After a series of tests and a very intensive ABR he was confirmed as profoundly deaf with no threshold of hearing. The emotions hit us like a steam train and immediately we felt worried and scared for what the future would hold for our perfect baby boy. I remember that day so clearly; when my partner Scott and I held each other close and cried ourselves to sleep. We almost had to mourn what our idea of a perfect child was, and come around to the fact that our experience as first time parents was going to be a little different than what we had expected.

We spent a good few days feeling extremely upset and worried for our little chap. Our baby was the only deaf person we had ever met. It was a completely new thing to learn about. I started to panic when I left him alone to sleep, as I thought he would wake up and be scared because he couldn’t hear us. It took me a while to realize that actually Harry had never known any different, and he shouldn’t be scared because to him the world had always been silent.

It was as quick as the day after Harry’s diagnosis when we had a phone call from our local Teacher of the Deaf. The amount of information being fed to us was quite overwhelming, but comforting knowing a support system was already in place. She came over soon after to introduce herself, and we immediately felt confident that our son wasn’t going to be forgotten about or left behind. She explained that she would help us with his development from Day 1 until he finished his education, which filled us with hope and a lot more confidence than we had initially had.

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