Monday, April 29, 2024

‘I Was Told I Was Miscarrying – But Actually, It Was My Appendix, Which Burst. And Then, I Did Eventually Lose My Baby.’ How Are You Today, Christie? (AKA Insta’s Skete)

TW: Miscarriage

This week is Baby Loss Awareness Week and here at Capsule we’re committed to sharing the stories and information about this topic which is SO important, yet so rarely openly discussed. 

In NZ we don’t collect data on the number of miscarriages, but it’s estimated that between 13,000 to 15,000 women experience a miscarriage in NZ every year. That means for every four pregnancies, one ends in miscarriage.

Then, there are the babies who are stillborn – who die during pregnancy or in utero after the 20th week of pregnancy. Each year about one in every 200 pregnancies ends in stillbirth.

Today we’re lucky enough to talk to Christie Hoyle, who is better known by many Kiwis as SKETE – an Instagram account where she shares the ups and downs of her life, but also starts some incredible discussions and opens up the floor for women to share what’s happening to them and the issues that really matter.

Recently, she opened up about the hugely traumatic loss of her son, Ollie. Christie and her husband sought medical assistance at the start of her second trimester when she was in a lot of pain. They were told she was miscarrying their baby. But in fact, her body was fighting appendicitis – a situation which became extremely serious when her appendix burst, which, tragically, eventually led to the death of Ollie. Cruelly, as an added blow, it also led to years of infertility, with Christie and her husband finally adding to their family with the help of IVF.

Here, Christie so generously shares her experience of losing Ollie, and tells why it’s so important we share our stories of loss, why maternal healthcare is everything and what you can do to support others who find themselves facing a heartbreaking loss.

How are you today, Christie?

Hey Alice, I’m great thank you! 

You have amassed a pretty amazing, loyal following on your Instagram, Skete. Can you tell Capsule readers who might not know about it, a little bit about your online community and what happens on your page?

Skete was a happy accident, it kind of just happened. It’s evolved over time and now I would probably describe it as a community of likeminded people. I run the page but my followers have a huge input in the content. We share stories, general trials and tribulations of life, we explore heavier journeys many of us may be experiences such as infertility and loss, we help one another out and raise awareness around topics we are passionate about. I share random ponderings on current events and random things with a fair amount of humour and satire mixed in between. Every day is different, you never know what to expect.

You’re incredibly honest and transparent with your followers about your life – including the ups, downs and the mundane (which is wonderfully refreshing in today’s world!). Do you think that’s part of why your page resonates with people so much?

I think with the evolution of Skete, the way I run the page has certainly curated the type of community that has risen from it. There is a sense of belonging, a lot of people have found it to be a safe outlet where they can share and ask for help/advice. I am very vocal about my own values and although I do think that played a big part in generating the type of following Skete has, I think it’s the community as a whole that many followers enjoy being a part of. People want to be seen and heard, Skete has become that place for them.

You also often play matchmaker on the site, inviting your followers to send in their problems, and have others who are in a position to help, offer up their advice (or even time, money and belongings in some situations!). How does that leave you feeling? Watching it, it always reminds me of the good in people and that so many of us are actually out there wanting to help each other.

Social media can be incredibly powerful! I have seen some amazing generosity and kindness come from our community and it is extremely humbling. We have a pretty unique and special network of people and I’m honoured to be in a position to facilitate this type of support. I actually think many people want to help or wish they could but don’t know where to start, our page has broken down some barriers for this and it has become a group effort – I don’t take the credit!

One very personal thing you shared recently was a cake you and your family made for your son, Ollie – the little boy you lost 13 years ago when you were four months pregnant. We’re so incredibly sorry for your loss. The more we talk about baby loss, the more we are discovering how many families have stories to share. Why is it important to you to share your experience?

Thank you. I want people to feel seen, there is an incredible loneliness that comes with loss and we often don’t know where to start in supporting those going through it. I share Ollie’s story not only to honour him but also so those people going through the motions know they aren’t alone. By sharing his story it often opens up a line of communication and I start to receive messages from those who have experienced or are experiencing their own loss. It widens the community in a sense, opening up avenues of support and allows people to share their own stories if they wish.

We understand that Ollie’s death very tragically came after a misdiagnosis when you were seeking medical treatment. If you’re able, could you talk us through that experience and what happened to you and Ollie? Why were you seeking medical help that day?

When I was just over 12 weeks, I’d had a sore stomach that lasted an entire day. I pushed through it though, thinking it was just normal cramps and we had our NIPT scan booked for that afternoon. This came as a relief as I saw little Ollie bouncing around with happiness so I went home feeling secure in my pregnancy. That evening I started vomiting and could no longer stand the pain so we went to the hospital. They ran an ultrasound where again we could see little Ollie bopping about – it was then they told me I was likely having a miscarriage. This confused me as I could see him right there on the screen, happy as Larry! They said they could call the surgeons in to double check but due to the “late hour” they felt it “better not to disturb them” until the following morning. I had faith they knew what they were talking about and so I wanted for the inevitable to happen. 

I can’t even find the words to tell you how sorry I am that this happened to you and infuriated that this happened. It must have been an incredibly terrifying time for you – and your partner and family! – because I understand what was actually happening, was that you were suffering from appendicitis.

Yes, that same evening I felt this burst of pain on my lower right side that went rocketing through me, I flew off the bed, doubled over and screamed. The staff came running in, dosed me up on morphine and sent me up to the wards with the plan to see a surgeon first thing. I believe that was when my appendix burst, after that I had a bit of relief from the pain. I was delirious through the night, I remember on and off walking back and forward to the bathroom, vomiting all over myself and feeling barely coherent. Towards the morning, I felt this sense of peace coming over me – I felt like I was beginning to die and somehow I felt at ease with that, the feeling is indescribable. The surgeons collected me the following morning and upon waking from surgery I was told my appendix had burst and my body was full of pus – I was lucky to be alive. 

Ollie had survived. 

The weeks following were full of complications, I started feeling my health get progressively worse. Three weeks later I was back in hospital, my GP had run some bloods and said there was an infection showing. They ran another ultrasound and there was Ollie, bouncing around. They said they could see an abscess sitting right behind my uterus which would have been caused by leftover pus, if it wasn’t removed shortly it was at risk of leaking into my uterus which would subsequently kill Ollie. 

I waited that afternoon for surgery, it took hours. At one stage I got up to use the toilet and while I was standing in the corridor I felt my waters break. I called for help, they walked me back to my bed and the surgeon appeared. They said it was probably good news, they felt it was likely the abscess had cleared itself out and what I thought it was my waters was likely just the pus leaving my body. 

A while later I was sent back to surgery, when I woke a woman was sitting next to me. She told me that while I was in surgery my waters burst and they could see pus inside, she said Ollie wouldn’t survive and they would need to induce me. I wailed with frustration and confusion, I told her I had tried to tell them hours earlier my waters had broken, they were dismissive and left me alone to process my thoughts.

I’m so, so sorry Christie. This is unbelievably traumatic. If it’s something you feel comfortable sharing, are you able to tell us what happened when Ollie died?

While I sat alone, trying to understand everything that had just occurred, I felt something happening. I knew it was Ollie on his way out, I didn’t call out, instead I put my hands in between my legs ready to catch him and moments later he was there. 

I called out to them, they looked between my legs and confirmed it was Ollie and that he hadn’t survived. 

How did you get through that time? What did you do with all that anger? I’m imagining amongst ALL the emotions you experienced, unbridled rage was one of them – but was that the case? What were the emotions?

After Ollie’s birth, my immediate reaction was an intense feeling of wanting to protect Dan (my husband). I didn’t want his world to shatter like mine just had, I desperately tried to turn back time in my head but eventually he came in and when he did my world broke into two, particularly when I saw him lay eyes on Ollie for the first time. 

Over the coming weeks and months, I struggled with many emotions. Rage was of course one of them, but so was blame (self blame), hatred for those who let us down, denial, emptiness and failure. All I wanted to do was talk about Ollie all the time, I was surprised when this isolated me from some of my peers – they didn’t know how to react or what to say and I felt them beginning to withdraw from me. We were only 22 at the time, I think age played a part in our many of our friends inability to empathise. 

Was there anything you read, anything anyone said or did or reached out to you with that brought you some comfort during that time?

We held a funeral for Ollie, he sat in a little flax woven box and we left it open. After his funeral, each and every member that was there got up one by one and spoke silently to him. Not one person was weird about it – this meant so much more to me than they will ever know. 

Friends sent flowers, chocolates, small gifts and cards. This was huge for us, even if they didn’t have the words they found ways to show us they cared. One necklace in particular was sent to me by my best friend – a little angel, I still cherish it.

What was it like for your husband at that time?

Awful and probably more his story to tell. Dan was really, really affected by Ollie’s death (and almost seeing my die.) If I could turn back time and protect him from that pain I would. 

Can I ask if the failures of the medical team were ever something that was addressed? Did anything cone out of it?

No. I was encouraged to fight but I didn’t have any fight left. 

Now when I look back I wish I was supported more in this, I can see now how astronomically we were let down and it terrifies me this could be happening to others. 

In sharing your experience, I saw a number of women write in about the absolutely hideous things that have happened to them while pregnant. Many of whom also lost their precious babies, or who were born early/underweight/with complications, and felt they were let down by the medical system during a time when they – and their unborn babies! – were at their most vulnerable. It’s incredibly heart-breaking to read, but as someone who has experienced it themselves, I imagine those feelings are tenfold after going through it yourself. How does it feel reading those stories? I hope that one of the things you do feel is some pride in the fact that you are providing an outlet for these women to share their stories and know that their stories matter.

Since I was young, I have always been more than happy to be the place where peoples stories land. Knowing how much it helped me to talk about Ollie, I am more than happy to listen to those who want to share, it is a privilege. It’s absolutely an emotional thing to hear but if it makes someone feel heard and less alone then I will always be happy to be a safe place for someone. 

How can we improve maternal health in this country. What can we be doing as individuals right now to make changes?

This is such a huge and complex question and probably requires an entire article of its own along with an open forum for discussion. There is only so much an individual can do, but as a collective we can move mountains. I feel it is really really important we share our stories, ensure education around maternal health (physical AND mental) is readily available and easy to understand, along with arming pregnant people with the tools for self advocacy. Maternal health is EVERYTHING, no pregnant person should be made to feel they are simply a vessel. Your health and happiness is and absolutely should be prioritised and if your LMC doesn’t make you feel that way FIND A NEW ONE. I would love to involved with a group in forming some ideas of how we can make some changes happen, so let me know if you have any ideas!

I understand that in the years following you had a lot of difficulty in conceiving. My God, that must have been so devastating. Can you tell us about that journey?

The pus left behind from my appendix bursting along with the subsequent surgeries left scar tissue surrounding my ovaries and tubes. My tubes were completely squashed – there was no path for an egg and no way for sperm to reach one. My ovaries continued to form abscesses and due to all of the above I was told I would not be able to conceive naturally again. It took five and a half years and two rounds of IVF to conceive our twin girls. Infertility is a consuming and isolating journey that leaves behind scars, I will never get those years of heartbreak back but every moment was worth it because it lead to my girls. 

And now, you’re a mum several times over! Can you tell us a bit about your family now?

My oldest is almost 17, my girls are almost eight and my youngest is two. We live in Christchurch and have been based here for two and a half years, it’s tricky at times as we don’t have family here! Dan and I have been together for 21 years, he is my best friend, we are constantly learning from one another, I’m always excited to see where life takes us next. It’s an extremely hectic and busy household with four kids, we enjoy exploring and learning about new things and don’t take anything too seriously. 

How do you remember your son, Oliie now?

We talk about Ollie often, I know at different times as individuals we imagine he is here with us, for me in particular it’s on special occasions. On his birthday we have cake, we write messages to him and will often have a family outing or special dinner to honour his special day. He is buried in a plant in our house, I have at times noticed the kids playing around his plant or quietly holding the leaves.

That’s so beautiful. Do you have any advice for families who are going through a miscarriage or stillbirth right now?

There is no right or wrong way to grieve, every individual is different. Please be kind to yourself (particularly during the early stages) and if things get a bit much never be afraid to reach out for help. Find the things that brought you joy before your loss, treat yourself and give yourself grace. Put one foot in front of the other, take each day as it comes and allow yourself as much time as you need. Immerse yourself in things that make you happy, surround yourself with people who allow you to talk as much or as little as you like, your needs need to be a priority right now. I can’t promise the pain will go away but you will find yourself again, you will be happy again.

Do you have any advice for the friends and family of someone going through it too? So often people don’t know what to say or do, and unfortunately end up saying nothing instead.

Don’t expect them to tell you how to help. Instead of saying “let me know if you need anything” take matters into your own hands. Drop off dinners, send cleaning vouchers, take any kids they may have for an outing, don’t expect them to talk, gift them a massage or movie voucher, let them know you are thinking about it them. Remember birthdays and anniversaries, if they use their babies name make sure you use it too. Take cues from them and be patient. 

We don’t talk about these stories enough. There are so many families who still go through miscarriages and IVF alone, thinking they’re very much alone in their heart-break. Yet, one in four pregnancies ends in a miscarriage. Do you hope it’s something we’ll get better at talking about?

Yes and the only way to keep doing that is to keep talking about it ourselves.

I can’t thank you enough for being so generous with your story, Christie. Is there anything you’d like to talk about that we haven’t covered?

No, but I am always happy to chat and get involved so if anyone is reading this and needs to talk or has an idea they would like to bounce off me – please let me know!

You can find Christie on Instagram here.

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