TFMR - still can’t come to a decision

[Wombleofwimbledon1984]

Hi

For those of you who have had a TFMR or who have discovered a defect but have continued with the pregnancy I would really appreciate hearing about how you came to the decision. I know this is such a personal choice but ten days following bad news I still feel like I am no closer to making a choice.

Our baby has a heart problem that is fixable, and di George - which may be severe or may not be. The spectrum of symptoms is huge.

My husband wants to keep the baby but says he would be behind me in any decision. I believe him but don’t think even he can be sure he won’t have resentment going forwards.

I am so torn. I don’t want the child to have a hard life, but what if he is fairly healthy and happy? When I feel optimistic, am I just in denial?

I’ve phoned arc lots of times, have spoken to max appeal and we have gone to therapy, but I still just don’t know. I am 26 weeks and if we want a termination I have to really push for it on Tuesday.

I don’t know what I’m looking for really, just some insight into how others managed to come to and make peace with a decision that is probably the most important decision anyone would ever have to make...

Hi OP! I'm in a similar situation. Have been told baby has a rare lethal form of skeletal dysplasia. We have known now for over a month. We saw three different specialists and three diff hospitals. All mentioned termination. The pain we have gone through is indescribable (which is clearly how you're both feeling) my DP very much like yours never even blinked at the thought of TFMR. I spent time going back and forth with terminating or going full term. Everyone kept saying to us our heart will decide! I never thought that day would come, but a month in and we are very much going to go through with it. I know it's going to be so so hard, as I cry almost every day. Mentally it's going to be challenging, but for us we just can't live with the "what if". We've been told it's most definitely going to be lethal at birth, but for you it sounds like there may be hope! If it was me I'd go through with it and let nature take its course. I completely empathise with you regarding not wanting baby to suffer. I think about this every day and I am so scared he will. However, at same time I want my little man to hopefully see us and hear us tell him how much we love him.. even if it's just for 10seconds! It's so very heartbreaking and I'm so sorry you're having to do through with this incredibly hard decision! You never think you'd have to go through it! I'm currently 26weeks too! We found out at 20wks. So these last 6weeks have been life changing. However, as hard as it is I love reading to him, feeling his kicks and talking to him. It breaks my heart but at least I know he's safe inside until the day arrives. I pray for us both to have babies who arrive in this world to feel the love we have to give.

No decision you make is a wrong decision!! Whatever you decide is what's best for you both. I do understand why some people terminate. 💖💖 I hope this helps 💖💖

Hi MisssC, thank you so much for your reply. I’m so sorry you’re having to go through this, and think you’re amazing to have some positivity in such a tough time. I stopped talking to bump and hated it when DH touched it but am starting to engage again. The therapist talked a lot about mourning one child and taking the time to embrace another child you never expected to have.

Thinking of you. Feel free to pm me if you want to chat to someone going through something similar. Xx

Hi. Thanks. I know at first I found it hard to talk to bump. Every kick made me cry and get angry, but I'm now much more positive about it as every kick means he's alive and well 💙 I'm glad you're coming around to it too!

And does the therapist help a little? Are these therapist your searched for or were you recommended to them by the hospital? We've only spoken to ARC, we were pretty much told that there aren't any other counselling through the hosp unless we have lost a baby etc...

Thinking of you too and likewise pm me anytime xxx I hope you soon decide the best option for you both xx

My ds had an issue that caused pain for 4 years. His condition was quite often terminated for according to the hospital. Never considered it tbh.
If your dc has the chance of a pain free /quality future after initial surgery /treatment I would continue... Tough in the early days /years is manageable ime..

Thank you both. Di George’s is associated with 180 symptoms I think. Some medical, lots behavioural and learning related, and mental illness. Stats are so scary but they are really flawed as they think a lot of people have it but don’t know.

@MisssC3025 we were put in touch with a therapist by arc. She does nhs appointments but I think it’s hard to see her. We see her privately.

@Wombleofwimbledon1984 you are living through an experience that most people are lucky enough to have not real way to imagine. I have never lived a similar experience, but work with families facing such decisions. You have clearly spent a lot of time exploring your feelings and sound very realistic in your thinking. From the little bit you have shared her I get the impression that in your heart you want/need to continue with your pregnancy. Clearly you do not want your child to suffer, but you can make a plan with the hospital team about how to manage the “what ifs” which will address such issues.
I am more than happy for you (or @MisssC3025) to get in touch by PM if it might help to explore your feelings with someone who has supported many families in such situations
You are both incredibly brave to grapple with the very challenging truths about your babies’ situations and I have huge respect for you.
@MisssC3025 ARC have my info and know they can refer you to me- or you can just message me.
Sending love xx

@Wombleofwimbledon1984 I can’t give you any advice unfortunately other than only you can make the choice. Our baby was also diagnosed with a RAA & we were really concerned about her having digeorge, but thankfully the amnio was clear. But whilst waiting I did not know how I was going to make a decision if she had it, as like you said it’s such a spectrum & you don’t know what to do for the best. It would almost be an easier decision if you knew for sure the baby wouldn’t have a good quality of life. Sending you lots of strength to get thru this. Xx

At my 20 week scan my baby measured small. Many tests were run but nothing came back which left an amnio. Because nothing life threatening had shown in scan we declined because of miscarriage risk so we opted for an NIPT which came back high risk downs. A shock as I had been low risk at 12 week scan and no markers on scan

Had some fetal heart scans and nothing conclusive was found

Our thoughts with the amnio question and termination was that in our case nothing life limiting had been found on scan. Downs can also be a varying scale

We had also been trying for a child for many many years and this was a privately funded ivf baby. If someone the year before had said to us we had the option of a downs baby or no baby at all what would we have chosen? This was what made our mind up.

When we discussed our thoughts with the consultant she was lovely and no one mentioned termination ever again

She was born in October. Yes she does have Down's syndrome. It's been a rollercoaster including a stay at 8 weeks in intensive care with sever Bronchiolitis. We are in the hospital with appointments a lot but she is doing so well and doing what every other 4 month old baby is doing. Yes at some point we will probably hit a stumbling block but right now she's like every other baby and you'd never know. She had been diagnosed with a partial avsd which may or may not need an operation on before she's school age but it's not effecting her now and it's just going to be monitored. We have a fantastic team of doctors, specialists and nhs workers supporting and looking after us

This absolutely was the right decision for us. I hope I haven't caused offence to anyone who may have chosen a different path. The path ahead is going to be hard at times but she really is the most gorgeous happy smiley baby that amazes us every day.

How are you doing? @Wombleofwimbledon1984 💖💙

Hi @MisssC3025 we’ve decided to keep the baby. Thank you for your story @PrayingandHoping - your baby sounds gorgeous.

Things have gone downhill in other areas though - DH has been out of work for a while and now a job that was in the bag has fallen through. So money worries as well as all of this - I wish the universe would give us a break. How are you doing?

@Wombleofwimbledon1984

If u need any support over the next few months as someone who has been there I'm always here. Feel free to pm me.

I have a disabled child, who has a very rare genetic condition. Whilst I was pregnant some things were flagged but nothing definitive and the anomalies appeared to be small. Genetic testing came back clear at that stage because the condition is so rare.
She is now 7 and can’t walk or talk- she is quite profoundly disabled. It is hard with this level of disability but also wonderful because she is sweet and gentle and a joy. I love her so much, as do her siblings, and I’m definitely not someone who imagined doing this. I wouldn’t have chosen it but now that we are here I also wouldn’t change it.
It can put a strain on relationships, and is challenging, but I’d say overall has drawn my husband and I closer, although it has also made us tired! But then that is true of all parenting. Having a disabled child also changes you for the better- you enjoy small things in life, remember to appreciate each day and live a generally kinder life I think. You meet incredible people.
I don’t think there is a right or wrong decision, either choice will be hard in deferent ways. But try not to be too afraid of disability. People cope and life can be good.
Having said that, it can be hard too. I’m not sure if that is any help at all, but it may be worth speaking to people who have children if you can. Doctors are really quite pro termination in these circumstances I have found. But I also don’t want to say go ahead it will be wonderful all the time when there may be, or will be, challenges. Really best of luck, and I’m so sorry you are going through this.

Thanks @Thedogshow that gives me a lot of comfort. I think some of it is getting used to the shock - once It feels more normal I can feel more normal if you know what I mean.

Really wishing you the best of luck. I remember how awful it was when we found out something was wrong. It does become normal and whatever decision you make you will make the best one you can under the circumstances.

Dealing with potentially the same decision re digeorge as we find out this week about the test results.

Im the OP. Sorry to hear that. We went ahead with the pregnancy and have a very normal chatty almost 4 year old at mainstream nursery who is starting school soon. He was slower to walk and has lots of ear infections but that was it really. Of course no guarantee that this would be the outcome or that our son will stay this way. Let me know if you want to chat.

Thank you so much for your reply and offer. We received the best news this morning. No symptoms thankfully. We still have the CHD to deal with but it's not (hopefully not) life threatening as diagnosed with RAA ALSA.

I am super chuffed to hear your little one is going strong and you carried on.

Thanks again for the offer, it was really appreciated