Jo’s story

This week is Baby Loss Awareness week. I have thought very long and hard about sharing this story. I have gone backwards and forwards over many months. I’ve talked myself out of it multiple times.

I’ve questioned myself about why I’ve felt uncomfortable. The main reasons are stigma, lack of understanding and the judgment of others. And for that reason, it’s even more important to talk about.

I am terrible about talking about my feelings. If someone asks me face to face to explain how I feel, I struggle to put it into words. My mind goes blank, I clam up, I can’t breathe and either get really upset or switch out completely. I’ve struggled with anxiety and panic attacks on and off since my parents separated in my late teens. In my early twenties, I had a good few years of therapy during and after going through an abusive relationship. The relationship ultimately resulted in me having a breakdown once I’d managed to leave.

During a lot of sessions, I sat in absolute silence, a small part of the time out of sheer stubbornness, but the majority of time, I just couldn’t get the words out. I literally paid to sit with a complete stranger in silence. They tried everything to get me to talk. Nothing really worked. One session, there was a breakthrough. My therapist asked me to go away and write about how I was feeling and what I was experiencing.

And I did. I went away and wrote pages and pages, things I didn’t even realise I had blocked out. But I wrote it all in the third person, like it wasn’t about me. It’s the only way my mind allowed me to do it. It gave me the courage to leave. It also led me to the job I have been doing for 15 years.

Some have expressed fear that their story is undeserving, self-indulgent, pity seeking, people will judge them or portray themselves as a victim. And I think this stems back to the sad reality that there is still a massive stigma around talking about mental health and wellbeing and some inherited notions that we shouldn’t talk about certain topics.

And yes, there are always some that will think all of that. But there may be so many others suffering that your experience may help ease some of their pain. In my mind, that far outweighs anything else. Because there is one thing that unites all of us, regardless of culture, wealth, gender. We will all experience suffering at some point in our lives and we will all expect grief and loss. Writing about these experiences are important. It helps you process what’s happened, helps with accepting and moving forward and it helps others survive. It helps with the healing process.

Back in February, I wrote a post on my Facebook page after an incident I was involved in last November.

I have spent a year contemplating writing the full extent of what happened last year as I held a lot back. I have had difficulty finding the courage. I also know that I will be open to criticism for writing about it publicly. But I think it is really important to share to try and end some of the stigma.

It’s still hard; my partner and I see baby news and see things on TV. There have been times we’ve both just sat in tears. For months, I just felt completely empty with nowhere to channel any of it. It’s lonely.

Part of me finding the courage was reading about the partnership campaign by Antenatal Resource and Choices (ARC), Tommy’s and Petals. They are working to raise awareness around termination for medical reasons and for it to be recognised as a bereavement, like miscarriage. I have shared my story with them about Hyperemesis and loss to try and raise awareness to try and break the silence around this which so many are still scared to do.

At the start of November last year, I went to work as normal. I had been feeling ill for months and that particular morning I felt worse than usual. I dismissed it as being exhausted through work and having a young child and my partner working shifts. Kirby tried to get me to go to my GP for months as I was getting out of breath easily, falling asleep in the day and getting numbness in my limbs and restless legs. As my symptoms got worse I agreed to go and see my GP. After a few blood tests, I had extremely low iron so started to take the tablets. I picked up after a few months but soon started to feel a lot worse.

I started struggling to eat and drink and was being sick a lot. I just put it down to side effects from the tablets. Honestly, there were days I thought something must be really wrong but I kept trying to ignore it.

That one particular day in November, I kept going to the bathroom at work to throw up. I remember looking in the mirror and thinking something didn’t feel or look right. I decided to leave work earlier than normal that day. Something which I will regret forever.

On my way out of the car park, a woman caught my eye as she was slumped on the floor in the corner of the walkway. I recognised the woman as a client I have worked with for a few years. I wound my window down, she was slumped on the floor covered in blood, I called out her name and but she just slurred a rambled response back. My first thought was that she’d been stabbed or assaulted so I didn’t really think and parked my car on the side of the road and ran over to her. It was only when I got closer, I realised what had happened. There was broken glass everywhere and I realised she had been self harming with a broken glass bottle. 

I could not comprehend what was happening. Throughout the whole thing, she kept saying she wanted to die. 

I can’t really explain what happened to me that evening. It’s almost like I lost part of myself stood on that pavement. Something in me changed.

For the next few days, I couldn’t get out of bed. I couldn’t sleep, I was plagued with flash backs, going over and over what had happened. I couldn’t calm myself and I couldn’t stop being sick and couldn’t get out of bed. 

I thought it was just a reaction to what had happened, but I started to feel really unwell in the days afterwards. I remember my mum sat on the end of my bed with my partner in the room and I could see by their faces I didn’t look good. My mum turned to me and told me I looked like I did when I was pregnant with my son.

It took four years to conceive my son. He literally was a miracle and I am still amazed he’s here. After years of suffering infertility and the all consuming pain of trying to have a baby, I managed to fall pregnant. Unfortunately, not that I knew much about it prior to being pregnant, I was diagnosed with Hyperemesis Gravidarum (HG)at around 6 weeks. Although I was told it could pass, I suffered from severe sickness the entire pregnancy right up until my son was born. I honestly can say, without any exaggeration, it was the hardest, most loneliest thing I’ve ever been through and one of the most traumatic.

Unfortunately, it took months to get proper treatment, trying every anti-sickness medication going, vomiting blood and being admitted to hospital. I weighed just 6 and a half stone at my lowest. The only drug that reduced the vomiting was Ondansetron, an antiemetic that’s given to chemotherapy patients. It reduced the sickness but never touched the nausea. I was so desperate to eat, I was literally starving and petrified my baby wasn’t getting enough food. I can honestly say there were days I thought I was going to die. But I was so desperate for my baby, the thought of dying back then didn’t really come into it. It made it worse when others undermined it calling it morning sickness or made out I was exaggerating or being precious. Those comments compounded what I was already feeling; my body cannot do what it was designed to do, I am failing as a mother already.

Hyperemesis and the infertility took its toll on my relationship with my ex-husband. It put us under enormous strain and I had trouble getting over it; I don’t think he did either. The condition is poorly understood and neither of us received the right support. Looking back, my mum and my sister dragged me through those nine months, I would not have got through it without them.

Mums have an intuition about their children. My mum was right last November. Three days after the incident with the woman outside work, my partner and I found out I was pregnant.

My new partner Ant and I have been together for four years and have discussed children lots of times. I’ve always been desperate for more children, but the miserable reality is that Hyperemesis has robbed me of that opportunity. 

We were both in disbelief looking at the positive result. And petrified. Me more so as I knew the journey ahead of us. The sickness was so much worse and so intense this time. I was given the drugs straight away this time, but they didn’t stop the sickness. I struggled to get up for long enough to get my son ready for school. We tried to keep it as normal as possible for as long as we could. My mum would drive me and my son to school and she’d then drive me to her house and put me into her bed whilst Ant was at work. 

They were horribly dark days, I just laid in her bed, getting weaker. As the days passed, I struggled to get out of bed at all. I remember Ted asking me if I was going to die. It was impossible to hide from him, he put his hands on my tummy before we even explained it to him and told me I had a baby in my tummy. I reassured him I was going to be okay. But there are times I really didn’t think I was going to be okay. 

And then one day, my mum turned to me and said, this isn’t a choice my darling, you can’t put yourself through it.

I remember thinking that it was like my mum was giving me permission to do something I really didn’t want to do. I cannot even describe the pain. My heart broke in two. It was devastating.

I don’t like the word termination. For me and my partner, it wasn’t a choice. I would do anything for it to be different. The sense of loss, I cannot even put into words. The loss of a child that you are desperate for but will never be. I know I will never have any more children. I long to hold a baby in my arms again. I know I’m one of the lucky ones that got to do it at all.

That is something I’ve struggled to come to terms with. And I have struggled with my grief. I’ve not been able to talk about it. My partner has tried to get me to talk and I know he’s been in pain. But I barely have the words. I get angry with myself that my body can’t do what it’s supposed to do; HG makes you feel like you’re a failure or less of a woman. You feel like you’re letting people down.

More recently, I’m more accepting of what’s happened and what will be. It’s still hard; my partner and I see baby news and see things on TV. There have been times we’ve both just sat in tears. For months, I just felt completely empty with nowhere to channel any of it. It’s lonely.

The impact on my son was hard. It was the hardest thing trying to explain it to him and that’s what broke me the most. He went through months of being anxious that I was going to get sick again.

We told very few people about what we went through. There are a few I confided in, but I can see and hear they don’t understand. One person’s response, “I thought you wanted more children?” “Can’t you just take some tablets, it will pass.” 

If you haven’t been through HG, in the nicest possible way, it’s not something you will ever understand. HG affects 0.5 – 2% of pregnancies. Most recent research has found a gene causes the severe illness in HG sufferers. I found some comfort knowing this as it goes some way to getting this condition taken more seriously. It doesn’t ever really pass and something that stays with you forever.

There is a stigma attached to Termination for Medical Reasons that makes you feel that you are not entitled to grieve or to feel loss. Which means you suffer in silence and in isolation. And we have both suffered in silence and cried together because we didn’t know how others would respond. 

My little boy and Ant have both kept me going. Ted is my absolute miracle, I question myself everyday how he got here. Ant and I are planning on getting married and moving forward with our lives.

My experience is not unique. Everyone has their own survival story that has shaped who they are. I hope my story makes some people feel like they are not on their own.