12 Aug Clara’s Story
Having experienced a MMC (missed miscarriage) the year before, finding out we were pregnant was an exciting yet worrying time. After our 13-weeks scan we relaxed and shared the news.
However, at our 20-weeks scan, we discovered that our baby had Potters Syndrome. After numerous scans we discovered there were no working kidneys; they were incompatible with life.
Whilst we were told we would be supported if we wanted to continue with the pregnancy, there was no way we would be bringing our little one home. Their lungs would develop enough during the pregnancy, and they would not survive once they were born.
We made the decision to induce, it seemed the kindest thing to do all round. We had a little boy; perfectly formed and were able to stay with him under we were ready to leave.
We grieved HARD. Having a TFMR (termination for medical reasons) leaves you in a no man’s land.
Had I waited, I would have a still-born child, or even worse, watched him pass once born, yet many thought this was our choice.
There are many organisations that offer support to anyone affected by pregnancy and baby loss.
ARC offers information and support to expectant parents facing decisions about antenatal tests and results.
Sharon HawkinsPosted at 21:45h, 06 September
I’m sorry for your loss but absolutely understand the heartbreak.
We was expecting our second child but at the 21 week scan we was told that our baby had osteoporosis imperfector which meant she wouldn’t go full term as her bones would not grow and would squash her organs.
I remember signing the consent papers and it said relationship and I had to put MOTHER, it was heartbreaking and the guilt never leaves you., we was told at the clinic after that the chances of it happening again were low so two years later I was pregnant again and was told that I would be able to have a ultrasound scan at 19wks which is when the bones start growing and at the scan it was confirmed that our baby boy also had the condition, so we had to go through it all again. Obviously now we cannot have anymore children.
It’s been 13 years since we lost our second baby and the hurt and guilt is always there especially around the babies birthdays but we have to carry on as best we can and our babies are always in our hearts.
Laura PharoahPosted at 08:13h, 06 September
I’m so sorry for your loss. A similar thing happened to our daughter. After 5 years of trying to get pregnant and a round of failed IVF we finally succeeded. All seemed well at the 12 week scan but a scan at 21 weeks told us there was a gap in her windpipe, her lungs were solid and she was in heart failure. Her condition was “incompatible with life” and it was a case of when she died and not if. We decided on a TMFr because we were told her nerve endings wouldn’t form until 25weeks and so she wouldn’t feel anything. I can only describe having to make this decision as horrific and a year later I was diagnosed with PTSD, anxiety and depression. I’ve found myself having to say that I had a stillborn baby at times as I’ve been surprised by the amount of judgement I’ve had. Our daughter couldn’t have been more wanted and losing her has been life changing. People need to remember that not only have you lost your child but you had to formally make a heart breaking decision and live with the trauma and feelings that go with that.
I hope those that judge never find themselves in that situation.
ALEX FILLINGHAMPosted at 19:18h, 23 August
I’m so sorry for your loss. Your story is similar to ours, our baby had Anencephaly. We had to make that decision too, it’s true what you say people don’t understand and you are in no man’s land. Like you we did what we thought was best for our baby. Thank you for sharing your story, it helps to know that we are not alone in how we feel. xx
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