Milestone Day for Riley’s little sister

Milestone days are always the toughest and yesterday was emotionally challenging. We took this little superhero to go and get her 6 month vaccinations. She was a gem, we had no complications and we can now say she’s made it through a particularly fragile time of her life.

What hurts is that these are needles her brother should’ve lived to see, this is protection he should’ve already received and this is now a time where we should be planning and preparing for his 2nd Birthday a little over two weeks from now. Instead we’re a family that no matter how hard we try, will forever be left with an enormous hole that can never be filled.

This next 2 month window is tinged with sadness at a time where we should be celebrating. Riley’s birthday, our wedding anniversary, and Catherine’s birthday all fall within such a short period of time. The fact that Riley’s passing falls smack bang in the middle of it all means each one of these occasions is now bittersweet.

We’re a family who has felt the impact of vaccine preventable disease and it changes the fabric of how you live your life. Get your maternal booster, make sure your children follow the childhood immunisation schedule and avoid the bittersweet days.

Trust me, they’re not fun.

-Riley’s Dad

Jasmine’s Story – Pneumococcal Disease

Jasmine’s Story – As told by her mother Andrea Identical twins Gabrielle and Jasmine were delivered on Christmas Eve 2002. Their long term survival was questionable from day one. They both had heart defects and severe respiratory problems, however most devastatingly they were both found to be suffering from congenital bone marrow failure disease. I […]

Olivia’s Story – Whooping Cough

My daughter was just 3 weeks old when she had a runny nose and sneeze, with mildly not wanting feeds as much. This went on for a few days but I knew the early symptoms of whooping cough (thanks to light for Riley) so I took her to the doctor, the doctor didn’t want to swab her stating she was very healthy but I insisted and had to convince the doctor to do a swab. Overnight she got dramatically worse, her nose was completely blocked, she wouldn’t take feeds, mild cough, sneezing all the time, and was so tired and fatigued.

The next morning we got the call that the test was positive – my daughter had whooping cough, and she was admitted to hospital. At the hospital we were warned this could be a long haul, and they just didn’t know what would happen with my daughter being so small and how she would cope with the disease. Well, thanks to catching it early and the pregnancy booster my daughter never even got the horrible whooping cough, ‘cough’ and never even required oxygen in hospital. One of the doctors said they had never seen such a young baby fight it so amazingly well, with the nurses saying that they had never seen a baby cope so well. We left hospital when she was 4 weeks old after only a 3 day stay. She is now a healthy 6 month old.

I can honestly say if I hadn’t had my pregnancy booster or caught whooping cough early my daughter might not be here with us today. Early intervention and immunisations DO help.

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Jazmyn’s Story – Meningococcal disease

On Tuesday 25th August Jazmyn was a bright bubbly happy little girl, but at 10pm that night things took a turn in a direction that no one could have seen coming. It started with flu like symptoms and a high temp, which we thought nothing off at the time due to the rest of the family suffering from influenza B. On Wednesday morning Sarah was getting the girls ready for school drop off, and upon waking Jaz noticed her discomfort with touching her legs, and observed a heat like rash. The next step saved our little girls life, as Sarah decided to see the Drs just to be on the safe side. Upon observation of Jazmyn by the doctor a small pin prick sized mark was noticed, and during the examination time a second mark presented, causing extra concern. The doctor immediately sent Jaz to hospital for monitoring, the second step that saved her life.

During the next few hrs Jazmyn deteriorated rapidly and after a small “fit” episode around 1pm her condition spiralled. A purple patchy rash developed very rapidly all over her legs and arms and she was in extreme discomfort. During this time the doctor had been in touch with PICU at the Women’s and Children’s Hospital and discussed the best course of action with the suspicion being a strain of the meningococcal disease. It was organised to air lift her to the WCH in Adelaide for intensive care. The incredible Med Star team arrived at 4:30 and she was in the air at 6:30.

Our worst fears were confirmed Friday morning via blood tests that Jazmyn was indeed suffering from the meningococcal B type disease, the most aggressive and dangerous type of meningococcal.

It is only due to a mother’s intuition and knowledge of her kids, and the amazing doctor that detected the slight symptoms and reacted with immediate action that contributed to Jazmyn being alive today. Thanks also must go to the incredible Med Star team and the amazing doctors and nurses from PICU and medical ward 1 at WCH to the continued support, advice and encouragement through the this ordeal.

We cannot urge the importance for all parents to be vigilant and seek medical attention if any of the meningococcal symptoms present themselves, early action and treatment is the number one factor to save your child’s life.

 

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Fern’s Story – Whooping Cough

In September 2015, my 5 month old Fern had a cold. We went to the doctors a few times within a 3 week period and I was told she had asthma, then bronchitis. One night she couldn’t breathe while coughing and it seemed like she was choking, so I raced her up to the hospital. Once we arrived, she coughed so hard that we both got covered in phlegm. They could not find anything wrong with her and a nurse mentioned whooping cough was going around, so they tested her for whooping cough. I found out that my older kids’ school had 9 confirmed cases and no one was alerted. We got a phone call confirming that she had whooping cough and so we were back at the hospital, but they could not do anything for her as she was able to drink her bottle. I was shocked that they couldn’t help her.

At home it was a nightmare day and night watching my baby struggling to breathe, not knowing if that was going to be her last breath. They look on her face when it was happening brought tears flowing down my face. There was nothing I could do except hold her and pat her back. Just when it seemed like it would be going it would be back, and it seemed worse than when it started. She would scream in pain after every cough. I was a mess as a mother, watching this, feeling that somehow it was my fault.

I felt like no one understood. I would have friends that couldn’t understand why I wasn’t answering their phone calls, not catching up – they just kept writing it’s just a cough, it’s like croup, she will get over it soon. They just didn’t understand what was happening to her and how at any moment that she might just give up and go.

I honestly felt like it was never going to go away. The doctor told me it was 100 day cough, so I was counting the days while Googling to see if there was anything that could help. I tried everything, you name it, I tried it, and nothing worked. It came to 120 days and I couldn’t understand why it wasn’t gone. I then researched and found that babies take longer to get over whooping cough.

While she was coughing and screaming in pain, I just couldn’t understand why people do not vaccinate their children or themselves, Fern had only received 2 shots for this so far.  Yes, we do have that mentality that it won’t happen to us but it does – this is your child who depends on you to keep them alive, and personally to me vaccinations help them with this. I was told Fern has a mild case of whooping cough because of her vaccinations. I honestly feel if that was a mild case because of her vaccinations.  Imagine if I hadn’t given her the needles, she would more than likely not be here today.

The recovery process is long. It is now 6 months and it still hasn’t fully gone. When she gets worked up the whooping gasp for air and cough returns. One day it will be gone but we won’t know what damage it has done until she is older.

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Vacine Preventable Diseases

‘If I could turn back time I would protect myself.’

‘If I could turn back time I would protect myself.’

A brave Gold Coast mother speaks out about her baby daughter Eva who has been hospitalised for weeks with whooping cough, and talks about her heartbreaking regrets in her decision to reject the whooping cough vaccine during her pregnancy.

This is the very sad reality of whooping cough. Babies are being born vulnerable with no protection against the disease unless the mother receives a booster in their third trimester.

Nine out of ten babies who contract whooping cough will be hospitalised, many needing intensive care. When Riley was hospitalised, Catherine and Greg Hughes were told prepare for several weeks in the hospital.  In reality, they left without him in their arms at all.

For detailed information about why a whooping cough vaccination is recommended in pregnancy, this fact sheet is great: http://www.ncirs.edu.au/…/vaccinations-in-pregnancy-fact-sh…

For a link to some of the current scientific evidence for the safety and effectiveness of the whooping cough vaccine in pregnancy: http://nrvs.info/whooping-cough-vaccination-in-pregnancy-t…/

Watch the full video here:

 

A Letter to Riley – one year on.

Dear Riley,

Today it has been one year since we held you as you left this world, and left a huge un-repairable hole in our hearts.

We whispered promises to you which we have tried to keep. All the time we would have spent cuddling you has been channeled into trying to sure this doesn’t happen to other undeserving babies and children. We are so sorry it happened to you. It has been a hard year for us.

You have been loved by more people than you ever got to meet. Your sister talks about you all the time, she loved being your big sister, even if it was just for a short time. She loved you so much she even was excited to help change your nappies – that is love, coming from a three year old!

We’ve been replaying in our heads over and over those last few days and hours with you. Even though you died sleeping, Our greatest hope is that you could feel our love and hugs and cuddles as you left us. I hope you heard the lullaby we sang as you drifted away from us.

We can’t believe it’s been a year. We can’t believe we’ve survived. If we could hit rewind, we would have done it a long time ago.

We love you so much.

xxx Mummy & Daddy

A Mother’s Plea – Light For Riley

A year ago I was sitting there helpless next to Riley and decided to put this plea up on my Facebook, urging friends and family to have a whooping cough vaccination.

“If you haven’t been immunised against whooping cough (pertussis) please consider getting it done. Heartbreaking to watch 4 week old Riley struggle with it at PMH please keep him in your thoughts!

I remember this day clearly. We had just been moved to a room right near the nurses desk because they wanted to keep a closer eye on him. While we still hadn’t received the swab results yet, his doctor was convinced he had whooping cough. We were told to be prepared to stay in hospital for a long time, possibly weeks or even months. I remember (stupidly) feeling so much positivity. I never entertained the thought that he wouldn’t make it. My brain refused to go there. He was having a tough time but he was going to get better. That was the only thought running through my mind. It wasn’t until he was moved to ICU the next day that I started to feel seriously worried.

Wish I had cuddled him more when he was in hospital.

Catherine Hughes.

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Dad’s Perspective on Grief – Greg Hughes

I found this photo while I was shuffling through our folders and even when Rileybear was still brand new you could see the incredible amount of love our daughter possessed for him.

Our little girl has had to do so much growing up in the past 12 months and for me it’s been the most difficult aspect of our grieving process. As ridiculous as it might sound, I’d never actually seen my daughter cry purely because her feelings were hurt. Sure, she’d grizzle over not getting her own way, but the first time I heard weeping and I walked into her room to find her sobbing saying ‘I miss my little man’ almost ended me.

She’s had to learn to cope with the enormity of loss at a far earlier age than I would’ve liked and it’s something that I think will always remain, even subconsciously, as part of her identity. Thankfully, we’ve had so many generous people who have donated Teddies, Photo Albums and other little items that she cherishes and which constantly remind her of her brother.

These days she seems to be coping quite well. She’s ecstatic that she’s getting the opportunity to be a big sister again and she finds solace in sending her brother letters via balloon each month to show him what she’s up to at school and how much she misses him. While she takes comfort in these actions I’ll keep encouraging it, as painful as it might be for me as a parent.

I think the most upsetting aspect of what we do is the extremely personal encounters with individuals who’ve lost a child or in some cases children. I’ve met Mums and Dads on our travels who’ve lost as many as 14 children and it’s a club that no parent wants to be a part of. From miscarriage, to still borns and children who were cruelly taken far too soon, no parent nor family should ever have to endure the heartache associated with the loss of a child.

For those of you who’ve only recently experienced this awful circumstance, I implore you to seek support. You’re not alone, you shouldn’t have to deal with this by yourself and unfortunately there’s too many of us who’ve experienced similar paths to yourself and have walked the same journey you’re about to travel.

Grief left unchecked has the ability to tear families apart and ruin lives, and it’s for this reason that I post this – to remind those of you who’ve experienced the cruellest loss of all, that you’re not to blame. You should never be shamed for grieving your child and there’s no ‘timeframe’ to ‘get over it’. This is a lifelong scar that may fade, but never disappears completely and can be reopened at the most inopportune times.

I’d love to hear from those of you brave enough to share your stories. I truly think you’re incredible.

To the bereaved Mums, Dads, Sisters, Brothers, Grandparents, Guardians and all those in between – I salute you.

-Riley’s Dad

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Riley’s Story – Whooping cough

Riley Hughes was born a gorgeous and healthy baby boy on February 13th, 2015. He was our second child and we were so delighted to have him in our family.

At three weeks of age, he started displaying mild cold-like symptoms, and developed an occasional cough. We called out a locum, who assured us he was fine. However instincts took over, and after a night where he slept a lot and barely woke for his usual two-hourly breastfeed, we knew something wasn’t right. We took him straight to our local children’s hospital, Princess Margaret Hospital in Perth, Western Australia.

Riley was admitted that afternoon, and at first it was thought he had bronchiolitis. Pretty quickly, the doctors suspected pertussis (whooping cough) and began treating him for it. On the 4th day of his hospital stay, he was taken to PICU with pneumonia, and his swab tests confirmed he did indeed have whooping cough. He grew steadily worse and worse, and despite all the best medical intervention, Riley passed away in our arms the next afternoon, at just 32 days old.

While Riley was dying in hospital, we discovered that women in the UK, USA, Belgium and New Zealand were being recommended a whooping cough vaccine in their third trimester. This vaccine, usually given between 28-32 weeks gestation, provides the unborn baby with the necessary antibodies to protect them from this terrible disease. Since the introduction of this pregnancy vaccine, the UK has seen a reduction in infant deaths from pertussis by over 90%.

Two days after Riley’s death, our state government announced the introduction of a program where these third trimester booster shots would be offered free of charge to pregnant women. Other states soon followed, and now all states and territories in Australia have free whooping cough booster shots for pregnant women.
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