TMFR options

[BleakTimes22]

Hello. My husband and I received recent news of an abnormality picked up on the 20 week scan, and confirmed at the Fetal Medicine Unit. Based on the consultants comments at the time pointing to dire probabilities and possible options to consider - including termination - my husband and I researched and debated all weekend. However, on confirming our desire to terminate the pregnancy for not wanting our child to suffer, the hospital have stated that the legalities need to be considered, and said that because they cannot confirm a severe disability is almost certain, they can only rule in favour of a "social termination" rather than "medical termination". What this means is that the hospital will pass us on to a private organisation to continue with the termination - which in itself delays the process and pushes us closer to the 24 week deadline. My problem here is that I am deemed a high risk pregnancy and so would be more comfortable in a hospital environment prepared to deal with any eventuality. Also, I want to deliver and hold our baby rather than go down the surgical or other routes. I have heard nothing but terrible things about Marie Stopes and BPAS who treat TFMR mothers as though they are on a conveyor belt or using this as means of contraception. I am so stressed. Can anyone confirm that they were able to TFMR in a hospital despite perhaps not being classed under Classification E, i.e. an anomaly that will be fatal to the baby or cause severe disability?

Also to add, I am worried about the risk to future pregnancies. I desperately want a child, and I am willing to wait to heal, but would prefer my body go through the natural experience (if you can call it that). Surgical and other medical options are simply not on the cards here.

I’m so sorry you are going through this. I had to TFMR in Dec 2021 and also had a horrible fight on my hands to have it in hospital. I have a blood disorder which means BPAS etc would have been very risky for me. My situation was slightly different as they had agreed in my scenario that it was a termination for severe disability / incompatible with life diagnosis, but they still wanted me to use BPAS (even told me I would have to transport my baby myself in a Tupperware back to the pathology department in the hospital for the genetic testing). Are you in the UK? I just rang the FMU midwives to literally beg (daily, over Christmas) and got in touch with PALS. If I were you, I would go back to the hospital, maybe even in writing, and state the reasons for your decision and how this was based on the medical information provided to you by the consultant. That you are concerned that your baby would suffer for xyz reason. I would push them to reconsider.

FWIW I did start the process with BPAS (also worried about cut offs etc) and they have a TFMR dedicated line and process and they could not have been kinder. In many ways the women I spoke to from BPAS were more supportive than the hospital. They even called me on the afternoon that it happened to ask if I still wanted the appointment the following week and had a very supportive chat to me about aftercare and other resources.

i also recommend contacting ARC. They may have heard of this happening to other families and have some helpful talking points to discuss with your hospital.

i don’t think there is a hugely increased risk to future pregnancies, especially if not surgical. You will be giving birth and birth generally does not preclude having future children. ARC were very reassuring on this point as they have a community of women who have gone on to have healthy babies.

Big hand hold . It’s an awful awful thing so give yourself all the time in the world.

Hello @Leaf86 Thank you so much for your response and insights. indeed, I am in the UK. Will I definitely be able to have an induced termination in your opinion? I do not want a surgical termination and the medicine option is too risky at this stage. That is my main concern, although for the reasons stated a hospital setting would also be more appropriate.

To be clear @Leaf86 I want to give birth and I don't think this is an option if it is not recognised as a TFMR. Wording on the NHS site is vague, as the BPAS site. The choice of how we say goodbye is so important, seeing our child but also the testing afterwards

I honestly cannot sleep, have no one other than my husband to share my woes with, and time is not on my side to fight this. I am praying that someone at the hospital spares me, recognises this is my life although I might just be a piece of paper to be signed off at the end of the day to them. I am concerned involving PALS might make the hospital toe the legal line even more. They mentioned concern of me having regrets in 10 years. Honestly!

Hi @BleakTimes22

My understanding is that there are two routes to TFMR. Medical, which involves medication to stop the pregnancy followed by the inducement of labour (essentially) vs surgical. If you are more than 21 weeks and 6 days, they give the baby an injection before delivery to stop the heartbeat. I’m sorry if I am being too graphic, but I am not sure exactly which type you are wanting. It isn’t standard for the NHS to push surgical after 13 weeks and it would be normal to be able to hold your baby and say goodbye afterwards in a medical termination (and have genetic testing and a post mortem), if that’s what you want. I can’t be certain your hospital will agree as I don’t know your baby’s diagnosis or the hospital / trust policy, but your best bet is to keep up the dialogue with them and try to explain what you want and why. Wishing you all the best x

This was my understanding too @Leaf86 . It seems, however, as as being forced down the surgical route as BPAS say they will not do a medical induction post-Covid19, and my hospital are reluctant to be involved as they don't want to be accountable for the termination. I am in some weird living hell right now

Where is choice in all this? I think it has been missed that this is not an unwanted baby, but an unfortunate one who will suffer if they are made to live. I cannot believe I have to deal with this bureaucratic, ree tape nonsense on top of the grief of knowing I cannot continue on with the pregnancy

*red

I’m sorry I have no knowledge about this but am so sorry you are going through this.

I wonder if perhaps you need to press the high risk pregnancy aspect as the reason you need a hospital, and you could even offer to sign a disclaimer saying you agree that the termination is your choice and will bring no action based on this choice (or something). ARC would know better than me though. I wish you all the best of luck.

Leaf86 I’m so sorry you had that fight too. Tupperware??? Unbelievable.

I’m so sorry you’re in this position with your much wanted pregnancy. Completely understand that you want to hold your baby.

Who have you spoken to so far OP?

The wording for ground E is quite vague “substantial risk that if the child was born it would suffer from such physical and mental abnormalities as to be severely handicapped”. There are no legal definitions of substantial risk or severe handicap. The wording is a bit archaic as it’s from the 1967 act.

I second the recommendation of talking to
ARC, they really are lovely and well versed in this stuff. I think it would also be worth more conversations with Foetal medicine. If you phone the unit an FM midwife should be able to call you back. You could talk through with her and even ask for another consultant opinion if you wanted.

I have tried @minipie pushing the high-risk aspect, but I'm not sure I'm getting anywhere.

I am speaking with BPAS as I write this to understand how they can help if I am forced to go down the surgical route @UnclePastuso . I will speak with ARC for sure as I am so lost and distressed right now. Totally agree about the law wording too. I am aware that there is no legal definition of "significant risk" or "severely handicap". Also, the consultant yesterday recognised that there is a 95-98% chance of brain development issues, congential defects and chromosomal abnormalities, but that because we cannot know this until the baby is born, they are unwilling to put their names to this acknowledgement!!

I h__ave also asked for the Foetal Medicine Unit to get back to me with a second opinion although, as they base this on what has already been documented - which is all so carefully worded - I have little hope.

@BleakTimes22 that seems really odd. I didn’t have the TFMR in the end, but was offered it at various points and told it could be done at any gestation. This was for a cardiac abnormality that baby couldn’t survive without surgery but for which there were surgical options. They couldn’t say for certain whether they could fully repair or whether they’d have to do a partial repair which would potentially only last for 30 years. There’s an association with neurological issues such as Autism and ADHD but only a trend. They offered when I found out after 20 week scan, at 27 weeks when things were looking better and at 33 weeks when they were looking worse. One cardiologist was a bit hesitant at 33 weeks but said she would support it if colleagues agreed. 2 foetal medicine doctors fully supported it and they had a cardiology meeting and the cardiologists all
agreed they’d support it. Those numbers and that detail they’ve given you sound like they’d fit the bill to me. I’m so sorry you’re going through this.

I went to BPAS for a medical termination due to Edwards syndrome and it was a positive experience for me. The hospital would only offer a standard delivery and as that was my last pregnancy I didn’t want that to be my residing memory of labour.

Thank you @UnclePastuso for giving me insight into your experience. I am totally shocked that the doctors recognise the potential impact of the heart anomaly found, but are unwilling to act on it. One of the doctors said, "you could expect a perfectly healthy baby and still deliver a baby with problems." But that isn't the case is it?! We know there are very likely to be problems. BPAS were extremely sensitive when speaking to me, and also shocked and dismayed at my experience. They will try to reach out to other NHS hospitals to see if they will accommodate the termination desired, but did say that hospitals do not like to go against each other in terms of decision, so will only give this a couple days to hear back before encouraging me to go down the surgical route.

Perhaps if this was my last pregnancy @RudsyFarmer , it might contribute to me feeling differently about the surgical option. However, I do worry about the risk to future pregnancies. Also, I just really want to hug and kiss my baby goodbye. Not just rip it from me in bits (apologies, but this is how I picture it given I've been told there is trauma to the baby through the surgical approach)

The hospital have confirmed that they are unwilling to allow the medical termination to proceed without an amniocentesis being performed that confirms good reason to. So I have to go for the surgical option. Has anyone had problems conceiving after the surgical abortion? I'm terrified, especially as my c-section surely makes me more at risk of pregnancies not 'sticking' in the future.

ARC said they will try to get back to me with options, perhaps other hospitals who might be more willing to accommodate. I am so upset to be that 0.01% to experience something like this - and I feel so dismissed and alone with it all.

Is there a reason you can't have the amnio?

Having had an amniocentesis, I would recommend going down that route if it will get you where you're going. It's not a pleasant experience at all, but it's nowhere near as bad as I was expecting.

Does your hospital have bereavement mid wives? Try to speak to them if you can. They are there to support, rather than give medical guidance (although they are fully qualified, experienced midwives as well) so can be easier to talk to about how you want things to go, rather than looking at it from a purely medical perspective

An amnio + results would take me to 25 weeks, and then I would not legally be able to TFMR of my own accord @Ramdogs

It's an odd one @123ZYX, because whether the hospital supports the termination is really at their discretion given there is a fetal anomaly diagnosed. The department manager is now making the final decision but it seems unlikely. Was anyone referred to another hospital in order to be able to TFMR via medical approach at this gestation? Hoping ARC can help here.

Im so sorry. I had an amniocentesis at the hospital as part of the termination procedure. Are they offering you this? I can quite make sense of what the issues are and why the hospital is resistant.

i have had lots of surgical procedures due to MMCs and no it didn’t stop me from conceiving or carrying to term.

Hello @RudsyFarmer . It was mentioned that I could have an amniocentesis as part of the termination, then retracted when they become worried about legalities. Having now spoken with ARC, they are confused as apparently there are no legalities for the hospital to consider before 24 weeks. They can indeed rule the termination under Grounds C, and still manage the care - something they are saying that can't do. ARC are looking into what the problem is with the screening midwives directly. I am exhausted but in desperate need of a desired end in sight