22 May 2011

New Business

I have started a new business!!  It’s called hearinghenry and it will provide products to help parents of babies with hearing loss keep their Hearing Aids and Cochlear Implants on.  It is a small target market, but should make an enormous difference to the lives of these parents and their children.  It’s basically the things that I have trialled on Henry that work, such as the headband, which I am always been asked about.  Every time I take Henry to an appointment, every other parent of a child with CI’s wants to know how they can get a headband.  I know how hard it is to keep CIs on a baby by other means (almost impossible!), so I am really excited to be able to share this with other parents.

My business has three aims:
  • The hearinghenry products will allow parents to enjoy their baby and focus on getting to know their child at what is a difficult time for any parent, but even more so for a parent of a baby with hearing loss.  Mums just get to be mums, without worrying every moment that they are about to lose an important electronic device.
  • Because the hearinghenry products keep Hearing Aids and Cochlear Implants on so effectively, they will provide more consistent access to sound for babies during such a critical learning period, providing better long term outcomes in speech and comprehension. 
  • 50% of all profits will be donated to organisations such as SCIC and RIDBC, which provide such important services to families of children with hearing loss, and have done so much for our family (as I have previously written about here: Feeling Thankful - April 2011).
Why are the products needed?
With the introduction of universal neonatal hearing screening and the increased recognition of the importance of early intervention, babies now start wearing hearing aids as early as two weeks of age, and cochlear implants as early as five months.  The life of babies is not conducive to keeping a mini-computer behind their ears.  These devices are so valuable, you would barely trust most ten years olds to be responsible for them, yet we parents have to try and keep them on our tiny babies.  That first year with a new baby in your life is an overwhelming time for any new parent, whether it is your first baby, or your fourth.  Personally, I feel that many special moments in Henry’s first 12 months were clouded with worry over his hearing aids- his first attempts at rolling over; instead of watching with the video camera as I did for his sister, I was rescuing stray hearing aids that fell out in the process, too scared to leave the room – not because I might miss his first roll over, but because I was scared he might choke on a hearing aid while I was gone.  I have always thought how ironic it would be for my baby to choke on a hearing aid, after all we have been through with him already.  Toddlers can be even worse. They trick you with their seeming maturity; you think you can trust them.  Then they do something really silly with their CIs, like throwing them onto the busy road as you cross, and you wonder how much worse it can get.  Any reaction from you only serves to increase the excitement of the ‘game’.

hearinghenry hats – to keep Hearing Aids on
When Henry received his first hearing aids I was terrified of losing them.  I had read that I could use pilot caps to keep them on, but when I tried to look for them online, I trawled through website after website trying to find something reasonably priced that I could order online.  Regular clothing shops did not stock anything suitable and I found only two websites offering them, but they were expensive and difficult to order online.
The hearinghenry hats are a pilot cap which ties securely under the chin to prevent little hands getting in and pulling out Hearing Aids, or the Hearing Aids becoming loose on their own.  The hearinghenry hats will be easy to order online, economical and robust, and come in a variety of designs and colours, so look really cute!  The particular design of the hats makes them quick and easy to put on, yet tie up in a way that makes them very difficult for a baby to remove or access their Hearing Aids.   With the temptation removed, babies forget the Hearing Aids are even there and quickly move on to creating other mischief! 

hearinghenry headbands – to keep Cochlear Implants on
When Henry got his cochlear implants and was ‘switched on’, we were so excited that he could now hear and I was determined to make up for all the lost time, determined that I would keep his cochlear implants on his head for every waking moment.  But after three hours at home, the excitement had been replaced by absolute frustration; I just could not keep them on him.  I sat in tears holding them in my hands thinking what a terrible mother I was, I had put Henry through all the trauma of surgery to get his cochlear implants, yet now here I was giving up on the first day.  They came with all sorts of clips and devices and attachments to help keep them on babies, but nothing seemed to work.  Something had to be done; I couldn’t imagine coping with the next two years like this, constantly running after Henry trying to clip the batteries back onto his shirt, to reattach the cords he had once again pulled off, trying to mould the plastic around his ear to hold the heavy speech processor on, which was just too heavy for his tiny ears.  The next morning Will and I brainstormed and we had an inspiration - using Imogen’s headband, hair elastics and some scissors, we created Henry’s Headbands.  Since that morning, he has worn nothing else, and it works so perfectly. 

The existing solution looks like this:
Henry wearing the Cochlear snugfit

Batteries are worn on the baby's back, in a Babyworn (to reduce the weight on the baby's ears)

Henry doesn't find it very comfortable!  This device is mainly used by adults and is a one-size-fits all solution, so no wonder it is too heavy for Henry's ear!

A hook wraps around the ear, however I found the processor just so heavy that to make the hook tight enough ends up squashing Henry’s ear.  The battery is worn on the baby’s back, to reduce some of the weight, however I found the cords were just something else Henry could grab onto.  In reality what usually ended up happening was the processor would fall off and Henry would crawl along the ground, dragging the processor behind him.
Not a good way to treat this valuable piece of equipment and Henry's lifeline to being able to hear!

The hearinghenry headband provide a more convenient, more comfortable and just easier to manage solution to keeping Cochlear Implants on.  The headband is an elastic headband which holds the speech processor and magnetic coil – the external part of a cochlear implant - in place.  The headband holds all the pieces together, and can be slipped on and off with ease.
The hearinghenry headband

I can relax, let Henry enjoy exploring and not stress that his CIs could drop in the water (which equals disaster!)

Why is it so important to keep the devices on?
The first few years of any child’s life is vital to the development of language, however for a hearing impaired child, if the desired outcome is listening and spoken language, consistent access to meaningful sound is vital.  Dimity Dorman, the Managing Director and Founder of the Hear and Say Centre in Queensland wrote a paper in 2009 for the Alexander Graham Bell Association for the Deaf and Hard of Hearing titled “Hearing Loss in Babies is a Neurological Emergency” (available here) explaining that a baby born with significant hearing loss has already missed out on around 20 weeks of auditory stimulation and significant activation of auditory neural pathways in-utero.  She writes that “if the baby is to develop optimal listening and spoken language skills, then he or she needs to… have early auditory brain access through prompt fitting of modern hearing technology, such as cochlear implants and digital hearing aids”.
There are so many things a parent is expected to do once their child has access to sound to make up for lost time; it can be overwhelming.  Two of the most important things a parent can do are:
1)       Talk, talk, talk to their child every day to give maximum exposure to sound; and
2)       Ensure that their child’s hearing aids or cochlear implants are on at every waking moment.
The hearinghenry products are designed to make this as easy as possible for parents. 

Where to from here?
I am still in the process of setting up the website (www.hearinghenry.com), hoping to start selling the products really soon!  In the meantime, for those who are interested in the business, you can email me at sarah@hearinghenry.com.

20 May 2011

Tears

Mostly we have just gotten on with our life, with Henry and his CIs just part of our daily routine.  While I am working hard at developing his language, it too has just become a way of life.  The other day at the hairdresser I heard myself saying that my one year old baby was deaf, and it sounded so dramatic, so unusual, so serious.  And yet that’s not how it feels at all.  I almost had to check myself, are you sure?  But of course, our Henry is profoundly deaf.  And although he seems to interact with the world now like any other baby, we do celebrate his small successes with particular pride and joy.
Today, Henry has done so many amazing things, it makes my heart swell.  Starting with saying ‘woof, woof’ this morning when Grandpa took him to feed the dog, then whipping around to look for the birds in the tree he could hear chirping.  Grandma drove up in the truck and he excitedly started saying brrmmm, brrmm and waving to her.  She pointed out the goats on the hill and told him how they say maaa, mmaa.  He imitated the sound and pointed to them.  Later, while reading to him, he spontaneously said ‘ee, ee, ee’ when he saw the mouse, tried to do tsk tsk tsk for the rabbit, approximated meow for the cat and brm again for the car.  All without prompting.  He also attempted to imitate me saying ‘peekaboo’!  And then just now, as I type this while simultaneously trying to cook dinner and watch the two kids, Henry crawled towards the hot oven (I know, I know, but we can’t all be perfect mothers....) and I shouted “no! henry, uh-uh!”.  And he stopped and looked at me and burst into tears because of my harsh tone.  And my eyes welled up too, because having your baby hear you, is one of the most precious things in the world.

12 May 2011

Henry Reading


A video update to show how vocal Henry is getting.
I am just so proud of him!

04 May 2011

Hearing Age = 3 months

It is 3 months today since Henry was switched on to the world of sound, or really, the world.  I thought I would record his progress to date.

‘words’ that Henry can say, in context, without prompting:
  • o - o –o = ‘moo’ for cow
  • v – v- v = vrmmm for truck/car
  • ee – ee – ee = for mouse
  • a – a – a = maa for goat

Words that Henry understands when you say:
  • Henry
  • Imogen
  • Cow
  • Uh uh  (no)
  • Sit Down

Environmental sounds that Henry recognises and knows what they belong to:
  • Cars going past
  • Cows mooing
  • Wind chimes blowing
  • Birds chirping
  • Door opening

This short list does not seem to do justice to the enormous progress that Henry has made.  Even though he doesn’t understand most of what is said, and can’t produce many sounds or words himself, he understands the concept of language.  He understands communication.  The rest is ‘easy’.  Now he just needs to learn the vocab, the English language, practice, practice vocalisations and soon he will be understanding and talking!   Of course, it won’t be easy, but you have to celebrate the victories along the way, and I feel we have made a great leap forward to hearing henry.