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TFMR - First Time Mum - Support?

(5 Posts)
Stanley1099 Mon 26-Aug-19 12:11:47

Hello Everyone.

I'm looking for some support. I'm absolutely lost. I already know about the charities like ARC etc but I'm just looking for some real life stories to help.

I'm currently 27 weeks pregnant and last week, they came to the conclusion my unborn baby has a degree of fetal akinesia. Something quite rare with varying degrees. I've basically been told baby won't survive and could harm me if I went full term. I'm now awaiting a further scan on Friday to confirm findings but I'm being told termination is the safest option.

As a first time mum I am devastated. The fact I have to endure labour etc frightens me. I'm still currently pregnant so I feel completely alien to my body. It's so hard to explain.

We are being referred to genetic counselling to understand why this happened. From reading online (as you do!) It seems either one or both of us have a fault gene to cause something of this nature. I have nothing in my side of the family so I am shocked and confused.

Whilst I appreciate I need to deal with the situation right now, I cannot help but worry about my future and the possibilities of having a baby. Has anyone had a genetic concern but after have gone on to have a happy and healthy pregnancy?

I am totally lost. You never think it will happen to you. I've experienced a lot in my life, my dad died from terminal cancer in the space of the week. How I feel now feels even worse than how I felt then. I just want to wake up from this nightmare sad

OP’s posts: |
GiveMeHope103 Mon 26-Aug-19 20:34:26

Hi op. I'm so sorry that you are going though this. I had a tfmr 3 weeks ago at 22 weeks. It was devastating. We too discovered the baby had a genetic issue, achondroplasia but after the baby was born it was confirmed to be osteogenesis imperfecta and quite severe. We are due to see my doctor soon wrt genetic screening tests and a way forward.
My doctor did a surgical termination as he said that a medical is just too traumatic. I also decided that this was best for me. He discussed fertility treatment with us as an option.

Conorgog Tue 27-Aug-19 10:10:34

Sending a big handhold, it’s so tough. ARC are so helpful, you can ask them anything / especially questions about the process - labour, medications and what to do afterwards, they have a forum too. Thinking of you.

DinoGreen Tue 27-Aug-19 10:10:37

@Stanley1099 I’m so sorry you’re going through this. I had a TFMR just over a month ago. I wasn’t as far along as you, only 14 weeks, and I had a surgical. However I spoke to a number of mums on here who had had medical terminations and they all said that they were handled with compassion by the staff and for many, it is comforting to see and hold the baby.

In my case the baby had DS and it was not genetic but I know there are lots of options for future pregnancies including IVF to screen out the affected embryos (I think you will be entitled to this on the NHS if you do not have any other children) or early CVS testing.

Take care of yourself x

ShutupWesley Sun 15-Sep-19 11:45:05

I had a TFMR nearly 2 years ago. DD was diagnosed with a lethal skeletal dysplasia at the 12 week scan. Found out with the subsequent genetic counselling that it's a recessive disorder with a 25% chance of happening with every pregnancy.

I got pregnant again about 4 months later and that baby was absolutely fine, he's 19 months old now and absolutely nuts. I'm actually 10 weeks pregnant now and have a scan on Wednesday with Fetal Medicine which will tell us whether this baby is OK or not.

TFMR is scary and horrible but ultimately it's the kindest thing to do given the circumstances. I hope in your case, it's a random thing and you won't have to go through it again. Please feel free to PM me if you want.

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