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Support for those who have had a tfmr in light of recent media interest in NIPT

(20 Posts)
KittyandTeal Thu 06-Oct-16 17:59:13

I may be being a bit dramatic but I'm sure I'm not the only one feeling like this.

I had a tfmr with my much wanted dd2. She had T18. I know the discussions are all around T21 but I am finding it all very infuriating.

I am drawn to the discussions because I feel they re not explained properly. I should stay away, I know I should. I'm finding all the pro life, protecting unborn babies type talk very, very upsetting and it's brought back all the trauma I went through during my termination.

Maybe this is better in mental health as I guess it's linked to ptsd but there must be others around finding all this hard to read/hear.

Maybe I just wanted to acknowledge that for some of us a tfmr was protecting our much loved unborn baby. For some of us it was just the right choice. I know it was right but I still feel guilt. And at the bottom of it all this has just reminded me of what I have lost, the grief is enormous atm

offbeatgirl Thu 06-Oct-16 22:29:14

Hello kitty, I remember you from the antenatal choices thread, and I'm sorry for your losses. I'm finding coverage of the nipt frustrating, because it gives the impression that screening is purely about down's syndrome (and indeed skirts round the serious physical health problems which sometimes occur in down's syndrome - I hadn't realised how high the natural miscarriage rate is in pregnancies where the baby has trisonomy 21 until I found myself facing bad news in my first pregnancy - not down's - and started researching). As you'll know, the nipt also has excellent detection rates for several conditions with far worse prognoses.

The point I'm trying to make is that this kind of coverage trivialises the decisions we face, overlooks how ill our babies were, and instead portrays women who choose a tfmr as selfish intolerant eugenicists who couldn't face the idea of raising a less than perfect child. In truth, my only choice was when my baby would die.

I am vehemently pro choice, so the coverage angers me for this reason too. No woman should be forced to continue a pregnancy against her will, or should be denied knowledge to enable her to make an informed decision about what's best for her. But to choose to end a much wanted pregnancy because your baby has no prospect of a decent life expectancy is a heart wrenching thing to do, and it is normal and human to grieve that loss. I can't talk about my tfmr without crying. It doesn't mean that I didn't make the right decision.

AButterflyLightsBesideUs Fri 07-Oct-16 11:46:35

I want to applaud both of your posts. I had a tfmr for a lethal neural tube defect (later found he also had T18).

I do feel judged by some of the things that are being written at the moment, and I am careful about who I tell the full truth too. Like both of you though, my baby was going to die, and soon, and all I could do was choose when and try and save him pain and try and protect my existing small daughter from watching it all unfold much later on.

I think the publicity has been far too simplistic - as you say, it's implied that it is a Down's screening, and that life with Down's is great. It screens for a wide range of conditions, many with appalling prognoses, and Down's syndrome can also have a very poor prognosis, it's a very individual thing. We shouldn't be made to feel selfish or cowardly for these desperately sad and hard choices.

Kitty I also am troubled by my tfmr and feel some background guilt. It's not rational. But I think it's that feeling that as the mother I couldn't protect and save my child and that is something we are not programmed to just accept. I feel it too about DD1's natural loss. I feel at some level that I am responsible and I failed them. It horrified my therapist. I hope you're still seeing your counsellor and getting support through this flowers

KittyandTeal Fri 07-Oct-16 18:37:51

Hello both of you. I feel like I 'know' you both.

I'm so glad it's not just me feeling this way. Offbeat trivialising the issue is exactly how I feel about it. I find it hard to put into words just how difficult but also somehow simple the decision is to have a tfmr for a lethal diagnosis.

Butterflies I have always had massive body image issues but they have gone now, now I'm just really angry that my body has let me/us down. Irrational but that's how it is.

Bloody hard. I hate some of the stuff that's being written and really felt I needed a 'safe' place to offload

Struay0verthesea Fri 07-Oct-16 21:46:25

I opened this thread as I'm looking a lot at the miscarriage section. Whilst I've not had to have a tfmr I wanted to say you have my total understanding about why all the current discussion is so upsetting and frustrating. I hope you don't mind me responding to your thread Kitty.
I thought the recent BBC documentary on Down's syndrome was very irresponsibly biaised and in several parts felt judgemental. They should have used a presenter with far better skills at putting across the message about the new test screening for other trisomies. I just felt so angry and sad watching it.

I'm so sorry for the choices you've had to make. What a shitty position to find yourselves in. I am starting to reflect that my recent miscarriage aged 40 has quite possibly saved us from making very difficult decisions further on in the pregnancy.

If it helps at all I was told by a very wise person that irrational thoughts (like blaming yourself / your body) are part of the grief. I started to articulate that because I had a moment of panic about managing a third child financially I had "caused" the miscarriage. This person told me that sometimes it's not even worth reasoning out those thoughts as that is all part and parcel of grief and it needs to come out.

eastegg Fri 07-Oct-16 23:25:18

Just wanted to add my support to the voices on here. KItty I remember you from threads around the time I lost my baby at 16 weeks last summer, and subsequently .

I have found the way the choices presented by the NIPT are being portrayed frustrating and irritating, as if those who would opt for it are just thinking 'I don't want a Downs baby' . Sadly those of us with bitter experience know there is much more to find out from testing that that! Although that's not to say there aren't extremely serious problems that come with Downs as well.

I am glad I had my CVS because it told me, 2 weeks later and after having it confirmed that the baby did not have the 3 trisomies they can tell you about on the prelim result, that there was a ring chromosome which made it slightly less of a shock when I was told at a routine scan 2 days later that my baby had died.

As awful as it still was I'm also conscious that I didn't have to make the decision some of you on here have had to make. Hats off to you, what's happened to me has opened my eyes to the enormity of what you have been through.

It really grates when I hear 'I wouldn't have X y or z test because I wouldn't terminate anyway'. I think that view often comes from a lack of information which the current media coverage is doing nothing to help. It seems it's 'all about Downs' and that just makes me desperately sorry for all those poor babies like ours who never had a chance.

Sorry, bit rambling but hopefully you get my drift.

AliBingo Sat 08-Oct-16 08:44:23

Kitty I remember you too and your post and the others on this thread really resonated with me.

I had TFMR in 2013 and it was for Downs syndrome, so the baby could have survived and been quite high functioning, which made a huge dilemma and really heart breaking and difficult decision.

I found the programme so judgemental and unsympathetic to people who don't have access to all the resources that Sally and her family do. Often caring for a child with Downs syndrome means one if you quitting your job and the attendant poverty that comes with that. Also, there is such a range of effects of Downs syndrome and Sally didn't touch on any of the more serious and difficult ones. Very little mention of the worry about what happens to your child when you die.

I read the telly addicts thread here in this and they suggested making a complaint to the BBC which I have done.

I suspect Sally and many others reacting strongly in favour of this documentary are people who are anti choice, even when a baby is completely certain to die late in pregnancy or shortly after birth.

Sorry, I'm rambling! Thanks for this thread x

KittyandTeal Sat 08-Oct-16 13:42:19

I've not brought myself to watch the documentary, I just think it would be to upsetting.

I cannot imagine how horrid and hard this is for you. I'm finding it hard enough and somehow people are more 'accepting' or maybe just ignore the other trisomies. Having had a tfmr for T21 and having to watch and read al this shit must be so hard. I really feel for you.

Eastegg I find that whole blasé 'well I wouldn't have a termination anyway' attitude really grating. For some I believ that is true but for the majority I hold that they absolutely wouldn't know until they were in that situation.

Sturay thank you for your support. It's nice to know people who haven't been in our situations can empathise. Sometimes it feels a very small community (hence lots of us on mn 'knowing' each other'

Phephenson Tue 11-Oct-16 16:24:39

The Pool published an article the other day ant the documentary by Sally Phillips who voiced concerns about nipt being used to eradicate downs and people generally going a bit off their toot about it. I pointed out that nipt tests for more than just downs and that you can pay extra to be tested for micro deletions, some of which are severely life limiting. I was heartened that my comment got a lot of likes (and a couple of loony pro -life comments too, but I try not to reason with stupidity).
I'll have nipt in my next pregnancy and I'll make my own decision, I'm a grown up capable of conducting my own research - as KittyandTeal says, the majority wouldn't know what they would do until they are faced with the decision themselves

BagelDog Tue 11-Oct-16 16:33:14

My Niece had Down's, and severe cardiac anomalies and orsopageal problems that are associated with it. She passed away aged seven months having never left hospital and after two rounds of open heart surgery. I shouted at the TV a LOT watching that documentary as it presented a very positive view of life with Down's, and I was so frustrated that it was teiggerered by the NIPT test but didn't mention the other things tested for. A very odd spin to put on it all. I think those of you who have had tfmrs have been incredibly brave and taken decisions to protect your children, both the affected child and your others.

KittyandTeal Tue 11-Oct-16 18:18:56

Bagel I'm so sorry for your loss. How tragic.

Our dd2 had a very similar prognosis. Without too many grim details with the soft markers they picked up she'd have needed a feeding tube fitted to her stomach and she would have likely died from either a huge cardiac arrest or she would have suffocated because she'd 'forgotten' to breath (her brain anomolies affected her this way)

I think 'spin' is exactly the right word. It does feel like it's had a spin on it. Yes we should see those with functioning downs as wonderful additions to society but we also need to recognise that those we see in the wider world are those on one end of a very broad spectrum with many babies either being stillborn or dying in early life. I do feel there is also a patronising 'oh how cute' attitude to some people with Down's syndrome.

I'm still bloody furious about it although feeling less triggered by it. It's spurred me on with my marathon training either way!

Coi123 Sat 29-Oct-16 08:19:13

Hello everyone, this is the first time I have posted on this so I hope I'm doing it right. I have chosen to terminate my pregnancy at 16 weeks for medical reasons (trisomy 21 and heart problems) and I am totally and utterly devestated. It wasn't a planned baby as I'm getting married at Christmas but once we had gotten over the shock we were ecstatic. We always wanted children and were going to try after the wedding. I go in tomorrow to take the tablet to start the process then I wait to days and I have to go in to give birth. I'm so scared. Could anyone tell me is it painful and does it feel like labour?

AliBingo Sat 29-Oct-16 10:18:23

Hello, so sorry to hear your situation. Mine was very similar, diagnosis and number of weeks. It was my second pregnancy, I already had a daughter. I was devastated and it had a huge emotional toll but physically the tfmr was fine. Well, not too bad anyway.

I had no discernible effects from the tablets and when I went in, it all happened 4 or 5 hours after the pessary went in. I had no pain, had a top up tablet dose 2 hours after the pessary, sometime after that I had period cramps which got quite painful so I asked for pain relief and was given cocodamol, not sure what strength.

Pain stayed like that until if happened, was very sudden, tmi but I thought I needed a poo and it was the baby.

Placenta got a bit stuck and they had to do an internal to remove it, other option was surgery.

I bled for about 6 weeks and was pregnant after 4 months.

It didn't feel labour, nowhere near as bad, felt much more like very severe period pain, not unbearable at all like labour. I read a magazine through most of the cramps.

They wanted me to stay in but did let me out asking as i came back the next day for anti D and some other stuff. Forms I think.

They'll ask if you want to see your baby and what to do with their remains.

This board on here is brilliant:-

Loads of similar stories and if you start a new thread on there repeating your post from here I bet you'll get loads if great info and support. I spent a lots of time on there with mine, crying my eyes out asking tmi questions and reading loads of old threads. You might see mine in there from 2013, I was called Bigcorriefan then.

Sorry again, it's the hardest thing I've ever been through. The worst part was between diagnosis and the tfmr for me.

I have had 2 more babies since, hopefully you'll be ready to try again at some point x

Coi123 Sat 29-Oct-16 12:17:11

Thankyou so much AliBingo. Your words gave me alot of comfort. Especially reading that you have two children. I know I can never replace my baby but I'm already longing to be pregnant again. Even though I I actually still am :-(

Coi123 Sat 29-Oct-16 12:19:43

Sorry that should have said two children since xxx

AliBingo Sat 29-Oct-16 12:56:25

Yes I was exactly the same, it's so weird x

AGruffaloCrumble Sat 29-Oct-16 13:06:00

Not too much to say right now but as another TFMR Mum who has been active on those threads I wanted to check in.
DD2 had 22q deletion and HRHS, a very rate heart defect alongside holes, things missing. The biggest likelihood would have been her dying in the womb. Best case scenario living until maybe 5 in and out of hospital with multiple surgeries. We terminated at 16 weeks.

This is a wonderful thread. Thank you for making it Kitty, I've felt so hurt by that ridiculous documentary and it's bias. I complained to the BBC and didn't get anywhere but I felt better for having it logged. They portrayed an amnio on there where she stuck a knitting needle into a bag of water. It made me feel physically sick. A horrendous, and completely inaccurate portrayal.
Fuck everyone that judges but has never experienced what we have. We took pain instead of letting our children suffer. Until you're in the situation you have no idea what it's like.

Coi123 Sat 29-Oct-16 13:28:44

I totally agree, I already feel as though I couldn't tell people the exact story as people can be so judgemental :-( even with DS my baby already had horrific heart problems and would have been in and out of hospital. I am a teacher and have taught im a special school and I know how much extra care children with DS need. Not that I would ever judge anyone for having a child with DS or before my situation I wouldn't have judged people having a termination for T21. People can just be cruel with their opinions. It is so comforting to be around others who have been or who are going through the same.

MollyRedskirts Sat 29-Oct-16 13:41:07

Coi123, I've replied to your other thread. flowers

I'm glad I stumbled across this thread. I had a tfmr at 13 weeks, for trisomy 21 and associated heart problems. This was seven years ago. I've had two children since.

I've deliberately avoided watching that program, or from reading too much, but yes, I've picked up on the general attitude. It makes me so sad.

I don't regret my decision as it was the only decision I could have made at the time. I can't remember what heart problems my baby had, because I was in complete shock, but me and DH both remember being told our baby was likely to die in utero, or not live for very long. I chose to take the emotional pain of having a tfmr at a relatively early stage of pregnancy rather than experience the greater pain of losing a baby close to, or after birth.

I don't have much else to add, other than I'm glad we're not alone in this.

Coi123 Sat 29-Oct-16 14:46:23

It's a huge amount of comfort reading these messages. Thankyou so much to everyone who has replied. I can't tell you how much it is helping x

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