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Malakai's story: he died from whooping cough at 6wks old

Malakai.

By JAMILA RIZVI

Beth Cockroft’s voice shakes when she talks.

It shakes like she’s been running at full speed for far longer than her body is capable of. Beth’s voice shakes as if she’s still struggling to catch her breath after that sprint, desperately searching for the strength and fortitude that will allow her to push through the pain and keep going.

Her voice is full of sadness, knowledge and broken hope.

Beth’s son Malakai was born on 31 July this year. Six weeks later, on 17 September, Beth and her husband held Malakai in their arms, as his life support machine was switched off.

After almost two weeks of being told by doctors that Malakai had a cold, a sniffle, a viral infection, Beth’s youngest son passed away from whooping cough.

When Beth went to submit Malakai’s death notice to the local paper and explained how he’d died, the response was this:  ‘Whooping cough? No. That’s not a worry any more.’

‘Yeah it is,’ was Beth’s reply. ‘My son just died of it. It is still out there.’

Mamamia spoke to Beth earlier this week. For a full hour she quietly and methodically told Malakai’s story.

This is what she said.

Mamamia: Beth, tell me about bringing Malakai home for the first time. I know that he was born prematurely and had to stay in hospital a little longer.

Beth: I spent one night in the hospital doing what’s called rooming in. Malakai was premature so had spent a bit of time in the hospital and I hadn’t been with him. So rooming in is when the nurses are with you while you settle with each other and get to know each other again.

I’d said to my partner a couple of days before [the rooming in], ‘I’m really really sick, I’ve never been this sick before’. But the problem was that everyone was sick, he was sick, the grandparents were sick, the neighbours were sick.

We live in a small town and everybody was sick.

You’d run into the street and they’d go, ‘You know, I’ve been coughing for months.”

So the night I spent in hospital rooming in, I was coughing and coughing. I’d taken really minimal painkillers during the pregnancy but took Sudafed the night I was in the hospital. Coughing and coughing. We were discharged together and about a week and a half later he was unwell and we took him to the GP.

Mamamia: When did you first notice that something was wrong? What did the GP have to say when examining Malakai?

Beth: Malakai had been coughing. I took him to the GP and he told us that Malakai had a cold. Just a cold. We spoke to the GP about whooping cough amongst all of the other possibilities. We said, do you think it could be whooping cough. “No, no,” we were told. “It’s just a cough.”

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But the next day, he had an episode of apnoea. We’d been into town and took I could hear him coughing so I took him out of the car seat he just looked funny. He was a funny colour. I put him over my shoulder, patted him on the back, he had a little cough and was then alright again.

In that moment, I knew it was just not quite right.

When he was born he’d had some jaundice. So he was never that bright, baby pink colour. The more we went on the colours would change, and as the episodes of apnoea went on, he would go quite dark purple. Then, as that receded he’d come back to this jaundiced yellow tone once more.

Mamamia: Did you know much about whooping cough?

Tony and David McCaffrey, who lost their daughter Dana to whooping cough in 2009.

Beth: Only what I’d seen on the TV. I’d seen Dana’s story [the daughter of vaccination campaigner Toni McCaffrey, who died of whooping cough in 2009] and I had just cried and cried. So I knew a bit about it and the signs and symptoms.

Also, after I’d had my sixth son, who is my son just before Malakai, there had been at epidemic of whooping cough in our area and the Government was offering a booster. We had talked it over with friends and family and neighbours and everything but we did nothing about it because, at the time, our baby was already 2 months old and had had his needles.

When you fall pregnant and you go to those ante-natal visits, they make you fill out forms and they keep them. There is one page about smoking, a whole page about that and a page about alcohol and drinking during pregnancy and risks. There is a small bit where they talk about the positioning of a seatbelt while you’re pregnant, in case there is an accident. A whole segment about how to wear a seatbelt.

But nowhere on that form do they talk about vaccination or about whooping cough.

Mamamia: And what happened next? How soon did Malakai’s health start deteriorating?

Beth: He was still unwell [as the weekend passed]. Then [one night] we’d gotten up to breastfeed him and as I laid him down to start and the angle I tilted him at – it must have been – well, he just stopped breathing.

And again it was the colour. He went this dark, dark purple colour.

I told my partner it wasn’t right and he said ‘should we make another GP appointment’ and I said ‘No, let’s go to the hospital. Something just isn’t right with this baby.’

Mamamia: This was your local hospital in regional Queensland?

Beth: Yes. At the hospital, the doctors wanted to keep us and watch over us but we couldn’t stay in emergency. So we were led upstairs and because Malakai was so young we were put in the maternity ward… A little baby, who we now know had whooping cough, in an open, shared, maternity ward.

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Malakai.

Mamamia: Tell me about the night at Cairns hospital, that came later. What happened that night?

Beth: We got put through emergency and we had to wait for a doctor. We were waiting and waiting. It was a crazy night in emergency and there were people with handcuffs. And me with my little baby who just kept coughing.

Again he would look fine until he was coughing. You see, the problem with whooping cough is they look fine in between episodes. They just look fine. You scratch your head and think, this is just a baby with a cough.

I had to pick him up constantly, that was the only thing that would alleviate the coughing. We waiting in a back room in emergency until 3 or 4 in the morning. Doctors decided he had Bronchialitis, a viral infection. They would periodically come in and check, the consensus at that point was it was Bronchialitis and that it would improve after the four day mark.

Mamamia: And at this point, did anyone mention whooping cough?

Beth: I raised the subject with them, I raised the whooping cough. Do you think it could be whooping cough, I asked. I said to them, I have this feeling in my gut. I had seen the pictures of [other children who had died of whooping cough] and I had seen things on TV and it just looked like that. I asked for antibiotics but they kept telling me it was Bronchialitis, a virus and that [antibiotics] would do nothing.

When he had a coughing fit, his oxygen would go right, right down – 70 per cent saturation levels. He would struggle to breathe again and his heart rate would go up. The oxygen saturation alarm kept going off, again and again. The first few times the alarm sounded, I would press the nurse’s call button. They would come in, press silent on the alarm and leave.

Mamamia: And nobody seemed particularly worried about Malakai? The oxygen saturation levels you mentioned – they weren’t dangerous?

Beth: No. Well finally, they told me to just press the silent button myself when it went off. Something should have been done but it wasn’t. Nobody came in that room gowned or with a face mask. Nobody took it seriously and nobody would listen when I said I was scared it was whooping cough.

The next morning there was a change of staff and the nurse said ‘Oh my God, look at his stats’ and I said I’ve been left in a room for so long being told to hit silent and suddenly I was told this was a problem, that his oxygen was at seriously bad saturation levels. The nurse ran to get people and thing started happening all of a sudden.

I stood there and watched him suffocating. I stood there while it happened. I called my husband and said ‘we almost lost him’. The doctors administered antibiotics which is a great comfort but doesn’t do much for whooping cough because there is no cure. All it means is that there was less chance he could transfer the bacteria to anyone else.

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At this stage they still kept saying ‘this is a virus’. They said because he was premature it was lasting longer and was more severe. They still hadn’t performed a swab and nobody was listening to me saying it might be whooping cough.

Mamamia: And then you were transferred to a hospital in Brisbane, is that right? By this stage it must have been extremely serious for you to be moved such a distance to a major hospital?

Beth: Yes. By the next morning again they decided to send him to intensive care and in Cairns they just aren’t set up for little babies so… they decided to send us to The Mater Hospital in Brisbane.

While we were waiting, he had yet another violent coughing fit and after it stopped he went very, very still. The retrieval team from the Mater flew up to collect us and as soon as they arrived it was like he thought, okay, I can stop fighting now.

Had they been 5 minutes later, that would have been the end of it right there. His heart rate was over 200.

That was the 9th of September, where he basically started to give up. I asked them, what do you think it is, do you think there is any chance it might be whooping cough.

They looked at me like a crazy person and said “Of course it’s whooping cough, the symptoms are there, we’re going to treat it like whooping cough unless we’re proved otherwise.”

I was gobsmacked. It changed so quickly.

Mamamia: Beth, what happened next? After you realised it was whooping cough and that you had been right all along?

Beth: We walked around the hospital grounds and at some point during that night, they finally said to us ‘he’s not stable yet, we’re trying to put a line in, we’re going to stop for a minute and you can see him’. He was on a really high strength ventilator that would make his whole body shake.

Up to that point it was a little tube up his nose or cover on his mouth but this was a huge machine, his whole body was shaking, he would go up and down as they tried to stabilise him.

The next morning a nurse came out and said to us, look you need to come in now. Come now, things aren’t good. You need to come now. We ran through and as we got there Malakai’s heart failed. It was quite shocking. Only two days before they were saying he had bronchialitis.

…tiny little itty-bitty baby sized panels to give him an electric shock….20 people in the room trying to do things…..

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When we watched his little heart fail, I turned to my partner and suddenly I couldn’t stand any more… My legs just went and I fell. I know now it was shock. My knees wouldn’t work and I kept saying, “I can’t get up, I can’t stand, I can’t stand.” It was quite shocking. I’m sorry…

Mamamia: Oh Beth, you were incredibly brave to be in that room at all, watching all of that.

Beth and her husband hold Malakai as his life support is turned off.

Beth: [distressed]The doctor asked us about how we’d feel putting him on a bypass machine. I’d just seen my child die and said ‘Whatever, you do whatever, I am not a doctor, he’s in your hands. Try and fix him.’ The doctor told me this was the best for Malakai right now because that was our only option. So we said yes.

A couple of hours later he was on life support. He spent a week on that life support machine up until 17 September. Life support isn’t an easy thing to do, there is a lot of machinery, two nurses in the room at all time. All the things you don’t think of that your body does for you, a machine now does for you.

The amount of lines that were in him, were…. it was like a power board. It was something I’d never imagined, there are needles running in and drips everywhere, drips going into drips to keep all the drugs separate and not let them mix. We went through this hell week of things looking positive and then not again.

The rest of your life doesn’t matter, Malakai was everything. He had a CT scan that morning  and they said his brain was irrevocably damaged. And we made the decision between us and all the doctors who were there that it was futile for him to stay on life support.

My partner and I had talked it over the day before, I said I don’t care, if a child has one arm, you deal with it. If your child needs oxygen tanks in the house, then you deal with it. If there’s other things, if he can’t run or play because of damage to his heart or he needs a wheelchair… if I need to wipe his drool or his bum for the rest of his life you would do that.

But it was at the point he was so damaged that there was nothing, nothing in his head any more. Then we sat there. We sat there and we held him while he passed away.

Mamamia: Beth, I am so sorry for what has happened to Malakai. Did you want to take a moment? We can go on in just a minute, if you’re feeling up to it. I do want to ask, what you think needs to happen? What part of the process – and it feels like there were so many –  do you think let Malakai down?

Beth: I’ve sent a letter to the federal health minister and others. It’s not just awareness about vaccination, it’s awareness about the symptoms of whooping cough, the awareness of what it does to your body. I had no idea it could give a child brain damage through lack of oxygen to the brain. We need to make people aware.

Mamamia: Now, Malakai was too young to have yet been vaccinated to protect him from whooping cough. He was reliant on those around him being protected. If you could send a message to the parents who actively choose not to vaccinate their children and who encourage others to do the same, what would you say?

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Beth: To me, honestly, it’s like drink driving. If you choose not to vaccinate you run the same risks as a drink driver. Your choice, your life but you are ALSO risking the lives of the families around you. You can kill other people in the process. Not just yourself. If you don’t vaccinate, you can walk around passing these bugs on and you can kill my child as well. The lack of information and scare mongering is terrible.

Mamamia: Beth, what do you want to happen next? What is it you’re trying to achieve by speaking to Mamamia readers? What do you want Malakai’s legacy to be?

Beth: I want to see the booster funded [Beth is referring to the whooping cough booster for adults who are in contact with babies – including new parents – which has been de-funded in Queensland, Victoria, Tasmania, South Australia and the ACT].

There are absolutely no if, buts, no maybes. It needs to be done now. Not after the Government have another meeting. It needs to happen now.

There needs to be more awareness. Mums while they’re pregnant, even when they’re planning. Mums need to share stories, we need to talk to each other. Nobody talks about babies passing away because it’s such a horrible concept to talk about but we need to. My son passed away from something that is preventable.

Even after he passed away we said to the staff of the hospital, what happens now? We live in a 1000 people community, I mean, how will they know to be careful? Do we have letters or notifications? And they said no. They don’t. Malakai was in a maternity ward, he was around other people. Other newborn babies.

And something needs to be included on that form you get at your pre-natal appointments so that doctors and nurses talk to you about the need for boosters and to understand about things like whooping cough.

Many people don’t realise that the vaccine does wain and it’s not just for the parents, it is for other children in the family as well, older children. You’d hate to think that one of your older children was exposed to whooping cough at school could then cause the death of a baby in the family.

Mamamia: Beth, thank you so much for sharing Malakai’s story. We will do everything in our power to help raise awareness about the need for vaccination, education and booster shots via our engaged community of readers who will share the message with their networks. We offer you and your family all our love and support.

If you haven’t already, you can sign Mamamia’s vaccination pledge below.

Mamamia's Vaccination Pledge

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