MUM IS ALL EARS WHEN IT COMES TO HER SON’S HEALTH

Written by Karli Steenkamp 

Through a difficult pregnancy, Emma McDonald and her husband were relieved when their baby boy, Clancy was born. His parents soon realised that there were going to be a few challenges with their special baby boy. Clancy was diagnosed with Microtia and Atresia. Microtia is the malformation of the outer ear and Atresia is the absence of the ear canal. The ear and ear canal develop together, so usually, both these conditions go together.  

Emma’s pregnancy was difficult. Doctor’s were worried at her routine scan that something was wrong with Clancy. They thought it was chromosomal and that he wasn’t developing as well as he should. “They kept on saying that there is something that is not right, but they didn’t tell us what, they thought it was a hormonal type thing, so when he was born, my husband and I were both happy he was alive.” They didn’t realise that he was missing his ear until an hour after he was born. The doctors could only give them a proper diagnosis two days later, leaving them worried and confused. Microtia and Atresia affects 1 in 6000 babies worldwide. Microtia happens more often in the right ear and boys are prone to this condition. 

When they found out about Clancy’s condition, they decided to make the best of it. He was alive and they could handle anything. “We were a little more at ease when we found out that his kidneys were okay. Your ears develop at the same time as your kidneys. So when we figured out that his kidneys were fine, we were like, this is just an isolated situation. I think if we didn’t have the pregnancy the way we had it, I would be a mess. We were kind of prepared. When you need to process something, you need to laugh about it.” 

Clancy had to see an audiologist at 3, 5 and 7 weeks and they found that he does have hearing on his left side and on his right side, but because his right side has no ear canal there is a blockage, which is called conductive hearing loss. 

When he was two months old, he got fitted with a hearing aid. Because he has no ear, he has a headband that keeps it in place. It was important for them to get him a hearing aid to not hinder his development. “You have to be an advocate for your child and give him the best – it’s like if I had a child with one leg. He is different in the way that your brain develops in two parts, so it is really important that you hear with both ears.”   

Emma and her husband try to give their children a normal life and take these challenges in their stride. “We just wanted to put him in the best playgroup and best support network we could have. We have two older kids and we kind of wanted to normalise it for them. Let them be included and let them be aware that he is missing an ear and that is okay.” 

Clancy, who is four months old, loves his hearing aid. “When he wakes up after a sleep and we put it on, he just lights up as soon as it is on. He is starting to turn his head towards the aided side, which is really cool to see.” 

Emma wants to take the stigma away that people with hearing loss will have difficulty and be teased.  

“People will say he will probably get bullied for not having an ear and I think you know. people get bullied for the type of shoes they wear. Don’t take away giving your children the best opportunities because you are worried that they are going to be bullied. 

“I am still at the beginning of this journey with Clancy, so I am still learning, but this is for the parents particularly. Don’t be ashamed of it.” Emma says that in the beginning, she was thinking about what could happen to him. “I asked myself why I am thinking so negative about it? Why can’t I see it in a different light? What can we do to make him build resilience and teach him that he is okay?”  

They got involved with Hear and Say – a Queensland organisation. Clancy receives fortnightly therapy. They have to only pay a minimal amount and as a thank you, Emma, did a fundraiser to raise awareness. There are many kids that have one-sided hearing loss. “We did a cupcake day at a local park and one of the local cupcake stores donated half of it. We made some play dough, mum packs to give to the mums.   

It is important to raise awareness and let people know that there are organisations that can help. It is important to have the function of both ears. “I recently learned that even if you have one good ear like if Clancy gets a cold, his good ear could get blocked up and then he might not have any hearing. I think it is good that the free hearing screening is available. Because people label kids as naughty but sometimes it just comes back to hearing.” 

Clancy will in a few years time, hopefully, get his ear reconstructed. But he will have a normal childhood, thanks to his parents. “I just want him to be a kind kid and to be accepting of other people. And not to put limits on himself. He is going to be completely fine. I have three kids and I teach them to be resilient and they don’t have to have what everyone else has. I teach them to be accepting of other people that are not the same.” 

References: Hear and say With thanks to Emma McDonald and Sarah Matulin