Reading the story of little Jireh Winiata on Stuff last week prompted me to follow up on something that I'd been meaning to do for a while. My friends Katy and John are in a similar situation with regards to needing to fund a cochlear implant for their son James. I asked Katy if she'd mind answering a few questions to share with you all on the blog. Here's how it went:
Can you tell me a bit about how James came to be deaf?
James contracted pneumococcal meningitis sometime in the first four hours of life, in Wellington Hospital. We didn't know he was sick, and were sent home when he was a few hours old. He stopped feeding later that night, wouldn't sleep, and started making a strange grunting noise with each breath. He had no fever, no rash, and seemed otherwise fine, but just wouldn't settle.
Sometime around dawn on his second day, he started having little fits of screaming, and we called the postnatal ward, who told us to wait until Kenepuru Hospital opened at 8am and take him there. Luckily my midwife called just after, and told us to call an ambulance. We got to Wellington Hospital, where James was seen after half an hour or so by a paeds doctor, who freaked. In the lift on the way down to neonates, James had a massive seizure, and stopped breathing. He had contracted bacterial pneumonia, which had caused total sepsis (blood poisoning) which had gone into his spinal fluid and into the lining around his brain. (Meningitis.)
He was in a coma for the next two days, grey, unresponsive and having massive seizures every few minutes. We were told late that afternoon that he was very unlikely to make it through the night, and that perhaps now would be the time to get him christened. Funnily enough, we couldn't even take this in. No space in our heads for that kind of news!
However, early the next morning (James was two days old) he started breathing with the ventilator, instead of fighting it; his seizures came less regularly, and he turned pink again. (Which was super freaky! We hadn't realised how grey he was until he went the right colour again!)
On the third day in the hospital, he woke up, and they began the slow, painful process of whittling down the massive number of tubes and pipes in his little body.
On the fourth day, he started breathing on his own, and they could take out his breathing tube, as it was making his lungs bleed.
That was when the paeds specialist came in (when I was on my own - my partner, John, had gone home to be with our son Cameron, who was barely two at the time) and told us that he had found no babies that young who'd survived the infection, and that he would likely be deaf, blind, paralysed, brain damaged, that he might never walk or talk, and might not even know us. Oh, and if he got worse again, would they like us to switch him off? Thank God for the wonderful nurse, who pretty much kicked the specialist out of the room.
Having been given that diagnosis, James just seemed determined to prove him wrong. He improved as fast as he had declined, and within a week was able to be moved into the nursery with the other kids. He was tested for hearing loss then, along with vision etc, and it came back uncertain. He was tested again at three weeks old, and they said his hearing was going already. Again at five weeks, and he had severe hearing loss.
Meningitis fills the cochlear part of the ear with fluid, which then hardens to bone. The cochlea is the part of the ear that turns sound into brain waves, so without it, the brain can't process sound at all. James would be profoundly deaf within a few months. A cochlear implant replaces the damaged cochlea, and restores much of the hearing into that ear. We only had a short window of time to get it in, and also had to decide then and there if we were going to fund the second one, as once the cochlea is bone, the implant can't be put in.
What has this meant for your family?
James' deafness has changed a lot of things in our family, and many of them have been positive changes. We would never have met a whole community of amazing people had James not been deaf, and we wouldn't have found out just what we can survive as a family. However, it's also meant a huge raft of changes, from some major financial issues, to learning a whole new language. (While James can hear almost as well as your average person with his "ears" on, he is still and will always be deaf. He can't wear them in the bath or pool, and doesn't wear them to bed. Sometimes he just doesn't want them on at all. So we chose to teach him to Sign as well as speak, for those times when he can't hear, and for him to be a part of the Deaf community. This was a personal choice, and one I feel has been amazing for all of us!)
Financially - we had to fund the $30,000 to get the second implant, which we did with the help of an amazing community and super-supportive family and friends. Every five or so years James' "personally funded" implant needs upgrading at a cost of $10K each time, funded by us. For a family on one income, it's a pretty big ask.
What kind of implications would there have been for James' development if you hadn't been able to fund the other implant?
Children with hearing in only one ear find hearing with any kind of background noise especially hard. In a classroom, James would find it almost impossible to hear the teacher. You can see just how badly this would affect his ability to learn. They also have no sense of sound direction - he could hear a car coming, he just wouldn't know where it was coming from. We weren't willing to cripple his chances of succeeding at school just because of money. Luckily we didn't have to.
James isn't your youngest. Did your experience with him make you scared of having another child?
Umm... I think John was pretty keen to call it quits there. I found James the happiest, friendliest, most wonderful baby. All the issues only served to make me realise just how much I would have never learnt if it weren't for my kids... so I kinda hijacked John while he was still sleep deprived, and we had Milly when James was almost 17 months old. Funnily enough, John packed it in then and went for the snip before I could try again.
How have you been able to afford the implants?
I spent the first few weeks calling everyone I could think of, asking advice of everyone under the sun, trawling local shops to get ideas of anyone they knew... then our local Porirua Toy World called me, and said they'd like to help. They ended up getting over $2000 worth of toys to raffle, and through them we were put into contact with the local Rotary Club, who helped out with a huge grant. The Lions club did the same, and also put us on to fundraising ideas that they had heard of. We did sausage sizzles, we did raffles, we ran fun days... anything and everything we could put our minds to. The Southern Cochlear Implant Fund paid for James' second implant, and gave us a year to pay them back, which we did, with a bit extra too for them to give to the next kid who needed another implant. If it weren't for the most amazing people helping us out, then we couldn't have done it.
What would you like to see from the government?
I would like to see the government acknowledge just how much children need two functioning ears to have the chance to succeed at school. Without a decent education, these children are going to cost the government a whole hell of a lot more than the initial cost of the second implant. James has every opportunity to succeed. He is four, and is completely age appropriate in both speech and development. He attends a mainstream kindy, and will be going into a mainstream school. He has conversations with everyone he meets, wherever we go, and they understand him (when he's not talking so fast they can't follow - he has to get whole conversations in on the escalator! Or in lifts). He is the happiest, friendliest boy I have ever met, and will go a long way in life, of this I am sure.
Do you have a blog or a website?
We did, but I haven't updated it in a very long time. www.jameswhale.blogspot.com
How can people help?
By backing proposals currently going to Parliament petitioning for bilateral implants for children, and petitioning for better education for all deaf children, both with and without implants. (There are a number of deaf children in Wellington who can't get interpreters into school with them due to funding issues! It's absolutely crazy!)
We're also always looking for fundraising ideas, so if anyone has any crackers, we'd love to hear from them.
Have you got any fundraising ideas? Any similar experiences you'd like to share? Leave a comment below.
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