I had purposely deleted Facebook and Instagram for a while to protect myself but feel that while promoting our next two fundraising challenges, we need to be honest and share that our story has sadly taken on yet another reason for running and our fundraising.
It wouldn’t be right to ignore. Our whole ethos is being open about baby loss and trying to help break the taboo surrounding it.
It’s taken a lot for me to write and post this, So here goes.
After many years of rebuilding when Dylan died and then with our second loss in 2012, combined then with dealing through the anxiety and PTSD that appeared years later after Jenson stopped breathing at 6 weeks old; earlier this year we were finally ready to try again, to give Jenson a sibling to play with and not just visit at a grave.
Sadly it wasn’t to be.
They say 1 in 4 pregnancies end in loss. Turns out we are the other way round, 1 in 4 pregnancies end happily and 3 are losses.
After about 4 months we got a positive pregnancy test and I quickly became pretty sick with morning sickness. We told some friends and family – we don’t believe the 12 week safe myth anyway but thankfully kept it from Jenson.
At our 12 week scan in mid October, an abnormality was discovered and a couple of days later were told the baby not only had exomphalos (yes, you’ll probably need to go and google) and the bowel was growing outside the body, but also that the baby had major heart defects. The baby would have no quality of life, the prognosis bleak and we would be faced with many visits and stays at Great Ormond Street.
We were faced with a heartbreaking decision that no parent should have to make and had to say goodbye just over a week later on 28th October at 13+2. Not only did we have to make this horrendous decision, we also had to decide the best way for this to happen. There’s no best way.
This is called termination for medical reasons or TFMR as it’s known in the baby loss world. What a hideous name and does absolutely nothing to ease the guilt we feel making that decision. To make matters worse, we literally had to visit an abortion clinic in London to say goodbye. Typing that word breaks my heart further. This baby was very much wanted. I had to be quite stern with one nurse on a consulting phone call and ask her to please stop using that word.
A good friend said to me, ‘it’s the ultimate sacrifice as a mummy, you’re suffering so the baby doesn’t have to’.
We are quickly realising that TFMR is the taboo hidden within the taboo of baby loss.
So now we sit here broken once again, not really sure how we carry on or rebuild once more. But somehow we have to, for Jenson, for each other.
We’ve been through stillbirth, missed miscarriage and now TFMR.
We expected similar problems with this pregnancy, I was already on blood thinners, but were floored to hear of a new set of problems.
There’s definitely not enough support and knowledge out there for coping with TFMR and making those decisions. Life is difficult right now and I’m still signed off work at the moment.
Please bear with us.
Why us, again?
So we continue to try break the taboo, to raise awareness, because what else can we do?
For Dylan – stillborn 27 weeks May 2012
For the little one gone too soon – 11 weeks missed miscarriage December 2012
For Jenson – our miracle rainbow, October 2015
and now sadly for another little one, who would’ve been too poorly for this world – 13 weeks, TFMR, October 2020.