A TFMR is a heartbreaking decision that parents have to live with for the rest of their lives

GUEST BLOG BY AMY

**Trigger Warning** 

My partner & I met later in life & so we knew what we wanted & things moved quickly! After 16 months together we sadly miscarried our first baby at 6 weeks & 3 days – just a week or two after finding out we were pregnant & having just gotten our heads around our exciting news. 

We were devastated, & then devastated a billion times more so, when we faced the heartbreaking decision to go through with a termination for medical reasons (TFMR) just 6 months later, as our second baby was diagnosed with severe Hypoplastic Left Heart Syndrome (HLHS). The main chamber of their heart hadn’t developed & it wouldn’t be able to function outside of the womb.

In a way we were ‘fortunate’ 

Our diagnosis was given at 16 weeks, whereas many HLHS babies aren’t diagnosed until just after birth. If we had proceeded with the pregnancy it was unlikely our baby would survive birth, & if they did they would then face three major heart operations – each one with a high risk of death, long periods in hospital, possible disabilities, delayed development, constant risk of infection etc. Their only chance of a full life would be via a heart transplant.

A TFMR is a heartbreaking decision that parents have to live with for the rest of their lives, we chose to end the pregnancy of a VERY much wanted baby having already lost one.

As if our pain wasn’t enough at making this decision, we were then advised that if we chose to ‘terminate’ (I hate that word) at this stage, our options were to go through induced labour knowing baby wouldn’t be fully developed or alive at birth, or we could opt for a surgical termination. 

Neither myself nor my partner felt strong enough to cope with labour & we wanted to be left with the image of our happy baby dancing around on screen at our last scan, rather than what he/she would look like at such an early stage of birth. Which left the surgical termination & we suffered another blow when we were advised that our local NHS hospital would not perform a surgical termination past 12 weeks gestation & so our remaining option was a Marie Stopes abortion clinic, whose next available appointment was when I was 19 weeks pregnant. I can’t lie, we were horrified, the nearest clinic was over an hours drive from home & my partner wasn’t allowed to accompany me during the procedure.

We spent 3 weeks in limbo

I’d started to feel baby kick, I had the worst pregnancy heartburn, & yet it was all tinged with sadness knowing baby wouldn’t be in there for much longer. On the day of the appointment I took one last photo of my little bump, cried the entire journey & after booking in at the clinic my partner went off to sit in the car while I had the procedure under general anaesthetic. 7 hours he sat alone in the car while our baby was removed, while I went through the worst & most painful experience of my life, alone. And then we pretty much shut ourselves away from the world, our friends, our family, for months while we tried to process it all.

I completely understand why women have abortions, I have nothing against their decision but I will forever be heartbroken at how & where we had to end our pregnancy with such lack of privacy, respect or even acknowledgment as to why we were ending a much wanted pregnancy. My eyes well up writing this because this experience was 2.5 years ago & yet I remember every single detail of that day like it happened yesterday. I still cannot fathom as to why we had to go through such a traumatic time in such a manner & I pray that hospitals change their policy so they can provide other TFMR facing parents with far better & far more compassionate options & treatment.

I now live by the words of another TFMR mum – Laura Burdett – ‘I carry the pain of a broken heart every single day, I carry it so that my baby didn’t have to’.  We have roses planted in our garden in memory of our babies, engraved pebbles with the dates on, & the due dates, the end dates, are all etched in my brain never to be forgotten. I’ve since had two friends suffer stillbirths, two have miscarried. Baby loss is EVERYWHERE & yet sadly still seems so taboo & unspoken about. TFMR in particular seems to almost fall into a different category of loss, like your grief isn’t worthy and is something to be ashamed of.

I feel so strongly about changing that.

We took some time to start to heal physically & emotionally before we found the courage to try again, 5 months after our TFMR. During our 3rd pregnancy I held my breath at every scan, wouldn’t look at the screen until I received some confirmation that everything looked ok….I found it hard to accept the word ‘congratulations’ from people along the way & struggled to believe we’d ever bring a healthy baby home. Thankfully because of our HLHS baby we were given 3 additional heart scans at the Evelina Children’s Hospital, we just kept trying to function in between each appointment, desperate for a little more reassurance each time. I feel so sad that pregnancy after loss was so hard to enjoy, I couldn’t relax in to it, I was so anxious & it was 9 months of worry but it was all SO worth it, even the horrendous heartburn again!

My friends & family threw me the most beautiful rainbow themed baby shower & on the 9th April 2019 our rainbow boy made his dramatic entrance in to our world! Just one day past his due date – he clearly knew his mama & dada were too anxious to wait any longer! 

Even during labour I was convinced I wouldn’t be bringing a healthy baby home, unfortunately the trauma I suffered during my TFMR came back to me during labour & the stress of that led to complications but thankfully we both got through it. 17 months on I’m still super proud that I managed to almost get through the entire labour without any pain relief & just in the birthing pool until I needed assistance. I usually take a painkiller at the slightest hint of a headache so to have got through labour without any pain relief still makes me wonder who I was that day!!

Our beautiful boy is forever smiling & bringing so much joy to our lives. 

With every smile & laugh, every beam from his striking blue eyes (which he doesn’t get from either of us!) he heals our hearts a little more. His looks are nothing like we expected – we both have dark hair & dark eyes, like the rest of our families – yet he’s all blonde curls & big blue eyes. I like to think that our grandparents & my partner’s father who have passed away had a little meeting, wherever they are, & decided to send us an extra special one & that’s why he looks so different & so unique compared to what we expected! Miracles really do happen! 

Lost babies can’t be replaced & they’ll never be forgotten, it’s SO important to talk about them – personally I find it therapeutic & healing to share our story.

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