A story of surprise, love, understanding, appreciation and emojis.

Our 2nd beautiful baby was born on the 6th January 2014. I finally saw him and was extremely relieved that he looked perfect and he got a high score from the doctors. I was particularly worried so insisted on a paediatrician to be at the birth who said he couldn’t be healthier. Two healthy kids with no issues – it was such a relief. On day 2, our son, Eden had his hearing test. I told my husband to get the cute photo that looks like they are listening to music. He came back and said he failed but they assured us it was most likely fluid and would clear up. After 3 failed tests we were assured it was still fluid and went into a 3 hour stressful test at the hospital when Eden was 2 weeks old. During the test I kept telling my
husband to use it as an opportunity to sleep and that we should have gotten two smoked salmon bagels instead of one.

After the test was over (it was very stressful and the electrodes kept falling off Eden and they couldn’t get a clear result). The most wonderful woman, Bryn, then told us the results.  The conversation went like this (similar to many conversations I’ve had since we found out)…

​Bryn: So… Eden has mild to moderate hearing loss
Us: What? Will it get better?
Bryn: No
Us: Can he have a cochlear implant?
Bryn: No
Us: Will he need to wear hearing aids?
Bryn: Yes
Us: All the time?
Bryn: Yes, forever…
Us: But technology??
Bryn: Not currently
Us: (emoji with tears streaming down face)
Bryn: I’ll get a councillor…
Councillor: I know many people who prefer sign language to actually speaking
Us: What? Are you serious? (It turns out Eden doesn’t need to use sign language and the councillor was VERY confused… but he was great as passing tissues)
Bryn: He might have CMV and needs to go to pathology to be tested immediately
Us: What’s CMV?
Bryn: Don’t google it
Councillor: Can I get you guys a tissue?
Us: Yes and a vodka valium espresso martini in a drip please
Us: Whats next?
Bryn: Lots of testing, appointments, organisations to contact
Us: *Devastation emoji while madly texting our family* – is there one? There should be called ‘just found out bad news emoji’.

After that it was a blur of exhaustion, disappointment, stress and guilt that it could be much worse and I shouldn’t feel upset about it. However it was a loss and I needed to grieve that loss. We decided to message all our friends and let
them know so it would be out in the open and that I wouldn’t burst out crying if someone saw him with hearing aids and got a shock. No-one knew what to say (fair enough, I would be the same) so many people said, ‘There is so much worse
out there, at least he is healthy otherwise and you never know with technology…’.  This was true but it made me feel so guilty about feeling upset about it. There was one phone call which gave me the comfort and support I needed at the time. It was my brother who said, ‘that’s really shit news, I feel for you, it such a disappointment’. I felt validated and that someone empathised with me. I felt like it was okay to take a moment to be upset.

At 4 weeks old Eden got his first hearing aids and I was so scared. I wrote this email to him below… (I have made email addresses for my kids and I periodically write to them so they will have something for when they are older and an email
address, which isn’t Eden50346286829yesnomaybe@gmail.com).

‘Today we got your hearing aids and officially begun this journey of hearing loss which was such a surprise to all of us. My heart sunk when I learnt of your loss but I know you will do wonders with it and were brought to us for a reason. Your hearing aids look so sweet and we chose black to match with your curly thick hair. I know together we can remove any stigma associated with hearing loss and I know you will be stronger for it. Coincidentally today is the first day that you smiled. A sign perhaps.’

After weekly appointments in the city to get Eden’s ears moulds re done as he was growing so quickly, meeting the incredible Shepherd Centre in Newtown, who would become my lifeline and taking him for eye tests and a MRI to check if the inner ear was damaged, I started to get my head around it. We then decided to start testing to see if we could find out why Eden had hearing loss as no one in our families had it. We also wanted to see if he had any of the common syndromes and if any other issues would present.

One of the blood screening tests they do is checking thyroid levels. A month after his test the hospital called and said his results somehow didn’t match up and by chance landed on an Endocrinologists desk.  The Doctor couldn’t explain on the
phone and just said for the next few says at 8am we needed to have Eden’s blood taken each day. Another devastation emoji needed here when we found out his thyroid levels were too low and it was a result of the pituitary gland (a pea-sized body attached to the base of the brain that is important in controlling growth and development). We needed another MRI to see if there was a tumour in Eden’s brain and Eden needed to keep still for 1 hour or else an anaesthetic. This was so stressful. The results TG showed no tumour however we needed to start giving Eden Thyroxin medication every day through a syringe. We hoped they caught it in time however if they didn’t it would have resulted in irreversible brain damage. Eden had none of the symptoms of low thyroid levels and without this test we would have never known until he was 9 months old and not meeting his milestones. This is completely unrelated to hearing loss and if we had not done this general test Eden might have had brain damage. For the past two years Eden
has been monitored for his height and weight, which month after month along with his constant blood tests became such a stressful process. However at 12 months when Eden started walking the relief was enormous. This was one huge
milestone, which gave us so much reassurance he was going to be okay. Now at 22 months he is a thriving busy active boy and I feel so grateful everyday.

It put everything into perspective and knew then his hearing loss was not a big deal at all and it saved him. I felt incredibly blessed someone was looking out for us and gave Eden his hearing loss so we could in turn find out about his pituitary
gland issue.  I also feel like life is short and we get to experience a whole other world of incredible people living with hearing loss and also to educate others.

We are lucky that Eden can still hear about 60% of speech without his hearing aids, that he will attend a normal school and that the Shepherd Centre is there to support us and give Eden speech therapy sessions every week. I used to think people seeing his hearing aids would be a big deal and that I wouldn’t want them in his ears however if he is keeping them in his ears I am happy woman. He constantly pulls him out several times a day and after two grommets and adenoids surgery all I want is them in his ears as much as possible so he can develop normal speech. I spend a large proportion of my days searching cars, prams, roads, beaches, Westfield food courts etc looking for his hearing aids. We are so incredibly lucky it got picked up at hospital so he got aided early and that we found out about the thyroid levels and that he is a healthy boy. I feel immense gratitude every time we visit the children’s hospital and see children who have far worse issues and needs than Eden. I feel for their parents. I feel guilty in a way that we got away with Eden being so healthy and vibrant and cheeky too. The hearing tests only came into hospitals 10 years ago so growing up I didn’t see any children or babies with hearing aids. I hope this can somehow normalise it all. Please show your kids a picture of a child wearing hearing aid and tell them it’s the same idea as someone wearing glasses.

For me personally I really welcome any questions all about it. I wish people asked me more about it as it was the main thing going on with me for a long time however I totally understand why people wouldn’t. You don’t really know what to ask and you don’t want to upset the person. If any of your friends have kids with issues or special needs perhaps ask if they are happy to talk about it and ask questions. I feel like we can all then have a lot less judgment and way more understanding and empathy. Sometimes it’s just about listening. If you are reading this and you are dealing with an issue about your child I really feel for you. Every child will have some sort of issue and I guess it is our jobs at parents
to best help and navigate that for them (while we navigate a glass of wine too).

Now I have to go and look for a lost hearing aid before we head out! xx

Facts about Hearing Loss
– Over 90% of children with hearing loss are born to two parents with normal hearing
– On average one Australian child is identified with significant hearing loss every day
– A vast majority of hearing impaired children will not need to ever use sign language with the use of hearing aids and cochlear implants
– Most hearing impaired children graduating from the Shepherd Centre (www.shepherdcentre.org.au) will go to a mainstream school
– Hearing Loss can vary from person to person. The categories are Mild, Moderate, Severe and Profound.