Finding Out

Abbie Mitchell is a mental health, bereavement and suicide awareness advocate, speaker and trainer. At her 20 week scan, she discovered her unborn baby has congenital heart disease. Here, she shares her experience:

I always dreamt I’d become a mum one day and my husband and I were over the moon when we found out I was pregnant! We’d heard all the social ‘rules’ around keeping it quiet until the 12 week scan, but nothing prepared us for what might come out of the 20 week one.

My pregnancy had (and still has in many ways!) been blissful up until that point. I was incredibly fortunate not to have experienced morning sickness, I was active, saw friends and family regularly, was able to work, and was excited.

At the 20 week appointment we were told to come back because baby wasn’t lying in a position for them to get the heart measurements they needed (no matter how many Shakira style hip movements and star jumps I tried!) We were told this was common. The second time around it happened again. We were sceptical when they said they would refer us to a specialist to try and get this, but I didn’t think much of it as I’d heard of similar experiences. I even (in hindsight, naively) thought maybe this meant there was some kind of special equipment available elsewhere that could ‘zoom’ into the right place or something and get them what they needed.

However, when we were referred to a different hospital, and a fetal medicine unit, we began to speculate more. Was everything okay? I’d been feeling great! The 12 week scan showed good progress… the screening results didn’t show anything worrying!

When we turned up we were told, “So you’re here as they suspect there may be a hole in your baby’s heart”.

We were taken aback and I was almost instantly moved to tears.

“What!?” I repeated. “No, we were never told this.”

“It’s in your notes,” the sonographer said.

I later discovered that in our notes it read “VSD?” in very fine print at the bottom of the page with other terminology we weren’t sure of. Now forgive me if I’m wrong, but I don’t believe many, who don’t work in the medical field, first time parents to be, would know what those three letters stood for. I would have expected any worries to be shared verbally, rather than hidden at the bottom of a piece of paper. When we had previous scans this was never pointed out to us.

The sonographer apologised that this hadn’t been mentioned or explained to us prior the appointment.

That scan felt excruciating. I lay in silence, gripping my husband’s hand and not understanding the different coloured flashing lights on the screen but allowing the sonographer to concentrate. They confirmed that there was a problem but that a consultant will provide detail.

We were moved to a counselling room. My husband could hear tears coming from another. We sat, hand in hand, tightly, awaiting the unknown.
It was a bit of a blur to say the least. The words that stood out to me were: Large, Severe, Major, Defect, Open Heart Surgery and another acronym that sounded daunting, DORV.

The specialist was very clear despite this. They were to the point. Showed us diagrams and had a nurse nearby who then stayed on to offer emotional support and clarity, knowing many might not fully take in all the information straight away when they first hear there is a heart defect(s) with their baby.

I was numbish. It was horrible. We were in shock. The next stage was to head to another local hospital to do another scan and check nothing else was wrong. It also gave us the choice to have an amniocentesis (something that would determine if there were any genetic factors or syndromes linked to the heart defects). We opted in and were told we’d have a two week wait but could expect the first set of results in a few days.

The weeks that followed resembled the weather that week. Rain. Hail. Sunshine. Showers. Clouds. Repeat. Tears flowed. Smiles and jokes were shared to mask the pain, and joy came from the simple things in life like fresh air and eating well. Nothing else mattered apart from our baby’s health. It was the first time as a couple we had experienced such joint sadness and anxiety.

However, I want to talk about the positives. On the day of finding out, I contacted my colleague as I was due to go back to work and take a group of young people on a residential (weekend away). She sorted out all the admin for me but also, knew an old school friend, who had a blog about her son who was a ‘heart warrior’. A term I’d never heard of.

Within the first few days, I opened the blog and it helped me SO much to read the experience of another mother who had gone through experiences that may lay ahead for me and come through the other side. I immediately felt less alone. I reached out to the author and I cannot tell you how much they helped me. Detailed messages gave me a huge sense of relief, empathy, and care that someone else ‘got it’.

I was so frightened to tell my friends and family the news. I hadn’t processed my own feelings about it and didn’t want to feel that I needed to carry theirs too. Hearing from a peer was just what I needed. The blog introduced me to Tiny Tickers and I soon joined the Facebook parent group which gave me so much hope. I cannot stress enough how supportive the community is on there. When I plucked up the courage to write a post, almost immediately flowed responses of love, empathy and support which came flooding in. I’ve had direct messages too and to date I’m in touch with someone who’s a few weeks further along than I am with pretty much the same diagnosis and we message every few days to check in with each other and share how we feel. It’s incredible.

Nothing can prepare you for the shock of finding out your baby will have birth defects but I’ve been overwhelmed, in a positively emotional way, about the support that is available out there, thanks to Tiny Tickers and other accounts.

I’m aware my experience is unique to me. I won’t have the same ‘more common’ anxieties associated with new parenthood as others with babies without defects, and so to find a community out there who do understand, who do get it, and who are responsive and supportive, has made this (early!) journey so far, much more manageable and for that I’m truly grateful.

After reading so many stories and seeing pictures I can see why they call them heart warriors. Whatever happens from now on, I know my extended heart family are going to be there for me, and that makes all the difference. Please know you are not alone. Share and reach out. We’ll be there for each other.

Connect with Abbie on social media @abbiesmind and read more on her blog at Abbie’s Mind.