Losing My 11 Day Old Baby

posted in: Life, Parenting | 0

by Jess B

My name is Jess and I’m a local mum of 4 beautiful children. I have wanted to write about the story of Jack (my second born) but I didn’t know where to start. The beginning always seems to be good!

I have followed an Australian dad’s Facebook page for a long time. His page is called Dad Minus One. He lost his son Riley, a newborn to Whooping Cough in March 2015. I feel like in many ways as I’ve followed D-1’s story that we’ve ironically been intertwined along the way. I was watching the news in March 2015 when I heard about the passing of Riley. I was pregnant with my second, a boy who would be called Jack. I remember my husband asking me why I was crying to which I replied, ‘a little bub died because of Whooping Cough. That is just the worst thing ever’.

From there until the end of my pregnancy, I would educate pregnant mothers on the importance of getting their booster in the third trimester. I made sure all of my family had been vaccinated, for everything imaginable really.

The week before Jack was born a notification came up on my news feed from the Light for Riley Facebook page with a picture. It read at the top ‘Please help us protect our precious baby’. Brilliant, I thought and immediately posted it as my profile pic. ‘Listen to this’, I eagerly said to my husband, Angus, as I read every dot point. I got to the last one, ‘How gross – who would go near a baby with a cold sore?’. I then clearly remember thinking to myself, ‘that would never happen to me’.

Famous last words.

A week later, Jack was born with little fuss via C-section. He was beautiful, perfect. We were all very happy. Being in the luxury of a private hospital, I sent him to the nursery every night. About a third of the people that visited when we had our first, Aiden, visited Jack. It was a quiet, non-eventful week and on Thursday after 6 nights in hospital it was time for us to go home. I remember looking at my bub in his capsule, he looked a bit different. I said to Angus, ‘does he look ok to you?’.

‘Yep, let’s go’ he replied, and I didn’t give it another thought.

We went home.

Jack was fussy on the bottle and I just figured he was different to his brother Aiden, who was ravenous and couldn’t get enough. Over the next two days I tried different bottles, teats. Sometimes he fed, sometimes not so well.

On Saturday night at his 12am and 4am feed his nappies were dry. I began to worry. By 7:30am on the Sunday we were on our way back to hospital. We stayed in Emergency while they tried to figure out what was wrong with him. The NETS (Newborn Emergency Transport Service) team came and it took 5 ½ hours to stabilize him before we were transferred to the Sydney Children’s Hospital. When we went into an isolated room in ICU I knew things were really bad. They hooked Jack up to every medication you could imagine. He had drips in his feet. They couldn’t regulate his body temperature. The hours that followed were harrowing. There was nothing we could do to help, just watch as the doctors and nurses did their thing. They were amazing and for that I will always be thankful.

Jack put up the fight of his life but unfortunately at 10:10am on Monday, 21st Sep 2015, 11 days after he was born, our son grew his wings and left us. I remember asking the ICU Dr to stop CPR. They unhooked Jack and placed him in my arms. The noise that came out of my mouth is something that is almost indescribable. It was the sound of pure pain.

We stayed with him for hours. Eventually, we signed forms for an autopsy to be performed and left not knowing what our boy had died of. After what seemed like an eternity we got the call. “Your Jack died of Herpes Simplex Virus 1 Sepsis” said the head of ICU.

This lead to weeks of WTFs. Neither Angus or myself have ever had a cold sore in our lives. No one in our immediate families get them. Certainly, no one who visited had a cold sore. I learnt that you can shed the virus when you are getting a cold sore for the first time, but we weren’t sick. Close to 90% of the population carry the virus but don’t necessarily get cold sores. Did Jack catch it off a nurse? Did he catch it off me? ‘You can send yourself mad trying to figure it out,’ the head of ICU told me.

Well mad I nearly did go.

‘What now?’ I said to Angus. ‘Do we launch a national “Don’t kiss your baby” campaign?’. You can’t be immunised for HSV1. Even now, I find it difficult figuring out how best to spring into action and honour Jack in a proactive way to educate people about HSV. When I’ve told Jack’s story to people and followed with, ‘it’s a good idea not to kiss your baby’, they look at me like I’m mad. Kissing a baby is the most natural thing in the world.

While we were in ICU with Jack they also discovered he had a surge of Ferritin or iron in his blood. Unfortunately, at postmortem they did not get a sample of blood that could be tested to follow up. There was a question of whether Jack had an underlying genetic condition that can be triggered by HSV (but wouldn’t have affected the outcome, he would’ve died of HSV1 regardless) so that sent us down a road of months of genetic testing, all of which was stressful and, in the end, inconclusive. Just another layer of shittiness to add to our immense grief.

It’s funny the ‘life tips’ people bestow on you when you lose a child. I could write a book about them. I still remember one thing two family members said to me at Jack’s funeral, “Love, you know you’re so lucky to have Aiden. He’ll keep you going.” I remember thinking at the time, ‘What an awful thing to say! What the hell would you know? I could never replace one child with another’.

I guess their delivery wasn’t great but essentially Aiden (my first baby) did keep me going in many ways. I don’t know where I would’ve been without my oldest boy. He made us laugh when there was nothing the laugh about. He distracted us with love when things were just so bad. Had I had no other children, I probably would’ve gone to bed never to emerge again. It doesn’t surprise me that 70% of couples who lose a child where they have no other children end up divorcing.

So, over the coming weeks, I did what I do because I’m a pretty resilient chick. I forged on with life and believed, and still do, that this was the best way to honour Jack’s short life. Four months after Jack died I found out I was pregnant again. Another crazy by-product of losing Jack – the look of relief on people’s faces when I told them I was expecting. ‘Phew, a replacement child is on the way,’ was the expression on just about everyone’s face. I think people had assumed I had ‘gotten over’ Jack, which was the complete opposite.

One year and three days after we lost our precious Jack, and after what felt like the most stressful pregnancy ever, Eloise May Buchanan was born. She was beautiful, and we were trying so hard to be happy. We were happy. Just a different kind of happy.

Happy is different now.

Following her birth, we traipsed back and forth from the Children’s Hospital to have genetic tests done on her. It was horribly distressing having to take our new baby to the place where our last baby died. Aiden was 3.5 years old and kept asking if Eloise was going to die like Baby Jack. Such overwhelming conversations to have with a child so young.

Some of Eloise’s test results came back abnormal but for the most part she is a thriving nearly two-year old. She is a live wire and helped me feel love again when I was so cold. Rainbow babies are the best in some ways but there’s also an element of guilt associated with them – would we have had two babies so close together in age? In saying that she is the absolute joy of our lives.

So here I am, nearly three and a half years after losing our Jack and I have just given birth to our fourth child, a little boy called Patrick in late November. I guess I’ve written my story to to make people understand the dangers of HSV-1, to let them know the enormous impact it’s had on our lives and most importantly to let everyone know about Jack. If me telling his story encourages just one person to wash their hands extra well, to take extra precautions around babies or to avoid contact completely if they feel the tingle of a cold sore on their lips – then it will have been worth it.