TFMR at 13 weeks and scared - Brain Abnormality/Trisomy 13

[Mothalina]

Hello, this is my first time posting and I wanted to put this out there in case anyone has recently (or not so recently) been through similar and can offer any words of wisdom or hope...

I'm 37 with my first pregnancy. I wanted to start a family in my early 30s but it took a while for me to meet my OH who is 42. We were overjoyed to fall pregnant at our first attempt and I got the BFP just after Xmas 2021. We were surprised at how 'easy' it had been for us to conceive but as it turns out this pregnancy is not going to be so simple...

After a positive 9 week private scan where I was told baby looked healthy, had a good heartbeat and low risk of downs, I was lulled into a false sense of security. So last Thursday when we went to our NHS scan at 12 weeks 1 day, neither of us were prepared for what we were about to be told.

While we were looking at baby wriggling, the little fingers and facial features taking shape, the sonographer went very quiet. When I asked if everything was ok, she said she needed to take more photos first. She then showed us that there was empty space where the second half of the baby's brain should be. She typed the word 'Holoprosencephaly' followed by a question mark on the report. The nuchal test also gave readings of 3.5 - 4.0.

I don't think it really sunk in what it all meant until a counselling midwife took us into a private room and confirmed our worst fears by calling the scan 'devastating'. She said baby is unlikely to go to term and if it does, it won't live long. We were strongly advised to terminate and the decision was straightforward in one sense - the brain abnormality was very clear to see on the scan and baby would not be able to live outside of womb. She said there is nothing I've done wrong and it's due to a random chromosome error. I asked if it could happen again (I so badly needed some hope to cling to that it's just a one off) but she didn't seem to want to give any guarantees it couldn't reoccur, which I think has haunting me the most these past few days.

Unfortunately a consultant can't see us until 4pm Monday for more info and to plan for the termination. So it's been an agonising wait since Thursday and over this weekend.

What makes it even more sad is this weekend we were going to tell our close family and friends we were expecting. My OH has still gone to a planned lunch with his parents and brother's family, but I couldn't face spending the day with his little nieces. The sadness is just too much to be with other people's young children when I'm about to end the life of what we hoped would be our first child. sad

Because we've been given minimal information I've been Googling words from the sonographer's report and 'Holoprosencephaly' took me to Trisomy 13. If anyone has experience of Trisomy 13 and knows what genetic tests there are and how quickly they can be done, I'd really appreciate to know. I want to try for another pregnancy after this nightmare is over but don't know if I could face going through this all again.

I'm also scared about the termination. I'd have to go to another hospital across the country for a surgical one and because my cervix has never been opened before it sounds like a medical one would be better/safer. But I'm terrified. I hope it can be done soon as baby just keeps growing and I will be 13 weeks soon. But the hospital seems so overstretched and I'm worried I may be made to wait...

If anyone has anything reassuring to share I would really appreciate it. My OH is also grieving but continues to give me so much love, however I don't know how he can ever really understands what it's like to have this going on within your own body and even though I know we're in this together, I do feel very alone.

Thank you for reading.

Oh mothalina I am so very very sorry for your horrendous news

We found out our baby was sick at our 12 week scan. NT 6.5 so absolutely no doubt baby was terribly ill.

Our baby had semi-lobar holoprosencephaly. There they were moving and jiggling around and just as you have been told, there was no hope of survival after birth, or even of making it through a full term pregnancy. Our decision to terminate wasn't a decision at all. There was no choice. Baby had so much fluid in their wee body it was making it difficult for its heart to function. I just couldn't bare the thought of my baby in pain and struggling to 'breathe'.

I had a medical termination. The situation was awful but the process was handled sensitively and professionally by our foetal med consultant and the midwives. They only had space in a labour ward so I laboured all night in a room next to another lady in labour. Our babies were born within an hour of each other's in the morning and her baby screamed the place down for ages. My husband and I just smiled and thought, good for you wee one, make all the noise you want as our baby was in our arms. It might be an idea to ask if you can be placed away from a labour ward?

Baby was placed in a cold cot and we were given as much time as we needed/wanted to say goodbye. We had a gorgeous baby girl.

A charity called SIMBA make up memory boxes for parents in this situation. We would never have thought of many if the things included as we were so distraught. We have our daughters hand and foot prints, we read her a story from the box, she had a teddy and we got a teddy and her little blanket. Maybe ask if there is something like this at your hospital? When you lose your baby and are robbed of a lifetime of memories these little things can be your greatest treasures.

I am crying as I write this, as I will never get over the loss of our beautiful baby girl.

I'm also cosleeping an afternoon nap with my 6 month old baby girl.

Take everything step by step hour by hour and try not to let the blackness swallow you.

I find my grief is too much. It's like a big black hole waiting to suck me in. I give myself time every day to let a little bit out in small pieces. It's the only way to cope. We are 18 months on and I still cry every day for my gorgeous girl.

Sorry just read that jumbly mess back again.

What I mean to say is this is the worst of times and for me it has changed me forever.

But you will get through this.

There is hope after this if you decide you still want to be parents.

Please reach out to ARC who can be really helpful.

Feel free to pm me anytime.

Sending all the love in the world to you and your family to get you through this dark time xx

Oh I am so sorry.

My first baby had Patau's syndrome. We had. TFMR at twenty weeks as it wasn't discovered until 20 week scan.

I have gone on to have three healthy children, there is no genetic link or reason other than bad luck that it has happened to you.

@Arewethebadguys thank you so much for sharing your story and for all your kind words. I understand how painful it is retelling what you went through but please know how inspired I've been by your bravery and courage. And I'm so happy to hear you have gone on to have a healthy daughter. Congratulations. However I do understand she cannot take away the pain of the earlier loss of your little daughter. 18 months isn't that long ago, especially if you've gone through all the ups and downs of another pregnancy and birth since. I hope things will get easier for you over time. (Sorry to use that phrase. When my dad died in 2018 people said 'things would get easier with time' and it used to really annoyed me, but 3.5 years on, although I still miss him everyday, time does make the loss easier to bear.)

I hope I can get a private room, the proximity of being so close to women giving birth to healthy babies sounds really hard. I have spoken to ARC once already and sure I will be calling them again over the next few weeks. I will ask hospital about SIMBA and thank you for telling me about it. What a wonderful idea. I'm still so amazed both these services exist and how caring strangers can be. Gives you faith in humanity at a time (given the current news) when the world feels like a particularly bleak place. Sending you love @Arewethebadguys and a big hug.

@HumphreyCobblers thank you also for your kind words. 20 weeks seems so far along compared to my 12-13 weeks. I cannot imagine what that must have been like for you. But it's so amazing you now have three healthy children, what a blessing. I very much hope this is just 'bad luck' for us too. I have read on some feeds of women going through this more than once and it put the fear in me. I think I'm just so fretful and anxious at the moment that my brain goes straight to the worst case scenario.

OP, I am so sorry you are going through this. I had a TFMR at 15 weeks nearly 2 years ago due to trisomy 18. It was my third pregnancy after having 2 healthy babies. I initially thought it was my fault, there must have been something I did wrong, but actually it was just very, very bad luck. I was 36 at the time and people say it's due to age - likelihood of cheomosome abnormalities does increase with age but the vast majority of women aged 36 have healthy, uneventful pregnancies, so it was still bad luck.

The actual termination wasn't the worst part. It was a hugely confusing thing to go through, but the worst part were the 2 weeks before that when I had to come to terms with the fact that I was carrying a baby that would probably die during pregnancy. That was truly horrific.

I understand how alone you feel. My partner was very supportive and did all he could to help. But no one is as close to the baby as you, which is why no one who hasn't been through it can truly understand how heartbreaking it is.
I was desperate to fall pregnant again after my termination. Luckily all worked out well for me and my baby is nearly 1 now.
I hope you have enough support in real life and someone you can truly open up to. Wishing you all the best OP.

@HistoricMoment thank you for your message and the kinds words. I'm so sorry for your loss but am also happy to hear you now have two healthy children.

We have had more NHS attention this week and I feel reassured we're in good care. (The four day wait over the weekend with minimal info was just the worst.) We met a lovely consultant on Monday afternoon who is over 90 percent certain baby is Patau. Scans aside, my bloods came back with 1 in 9 odds. He couldn't do the CVS test on Monday to make absolutely sure because the placenta wasn't in the right place, but they will test after the termination.

I really hope it's just bad luck as everyone says, but would still like to be reassured it's random and not either of our genetics. However we won't get results until end of May, which seems a long way off...

I'm going in for the termination tomorrow AM. Feel thankful the hospital has squeezed me in this week and I've been told I'm getting a private room. The midwives I've met so far have been brilliantly supportive.

Thank you everyone who replied to my original post. It's so lonely going through this but I cannot express how much it really helps to hear from others who understand and who have gotten through to the other side. Much love to you all.

@Mothalina We have just been through something very similar a few weeks ago. In fact it was my baby girls funeral this morning.
We had a TFMR at 18weeks, our baby had T21, a heart issue and cystic hygroma the specialist did not think she would make it to 26weeks, it was still a very difficult decision to make and taking that tablet was so hard. Our hospital have special suites away from the maternity ward so you can give birth and then spend time with baby hopefully yours will have similar. Hope everything goes as well as it can do for you tomorrow x

@HoneyPea thank you for your kind message. I'm so sorry you have gone through something similar. I identify with how you felt swallowing the tablet. It's such a finite moment that you know you can't turn back from. It's so so hard. I hope you are healing and finding things to look forward to in the future.

I'm thankful I was in a private room and I never saw or heard any of the other ladies on the delivery ward. I had a very strong reaction to the vaginal tablets after just 20 minutes and didn't need any more. I've never given birth before so at first I thought I was over reacting and this couldn't be the pain already, so stupidly delayed taking anything stronger than paracetamol, which I sicked up! But it was all over within a couple of hours and I felt so much better afterwards. (I think I must have had those post birth hormones hit me hard.) We had time with baby and I wrapped her in a silk scarf with sunflowers on it. Sunflowers were my late father's favourite flower and I like to think he is looking after her little soul, where ever they both may be now.

Now I'm home and it's 11 days later, it's harder to move on than I expected. Being pregnant for 13 weeks feels like such a long time, although I know many ladies on here were pregnant for much longer and my heart goes out to all of you. While pregnant I felt sick 80 percent of the time and really withdrew from a lot of my hobbies, friends and work. I now feel this huge sense of lost time that I'll never get back. I also worry how long my period will take to return before we can try again...

I think the experience has brought me and my other half closer together, but there have been arguments too. We're still unsure who to open up to. I want to keep it private but he seems to want to share more.

Sending love to everyone who finds themselves reading this thread.

@Mothalina It's still hard just over 5weeks on but I do feel the funeral helped even though seeing the tiny casket was heartbreaking. Do they offer a funeral at 13weeks?
I'm so glad you got to give birth away from the main maternity ward I could not imagine hearing and seeing healthy babies being born at the same time. My experience was very similar, started contractions very quickly and by the time I got meds I was also sick but I ended up having to go to surgery as I was loosing a lot of blood and had retained placenta and the spinal finally stopped the pain.
To give you some idea of where my body is now. My bleeding lasted about 3weeks and I have just started my first period a few days ago.
I have heard it can take longer to come back the further along you were.

I found it hard to tell people to and still do every time I tell someone new 💔 A lot of our friends already knew I was pregnant as I was showing from around 7/8weeks. In a way it has made me feel better talking about her to people. Have you been told babies sex and did you give them a name?

@HoneyPea I'm so sorry to hear there were complications with your TFMR. That must have been really scary for you and your partner. Has it been reassuring to have your period return fairly quickly? I hope you don't mind me asking how you feel about TTC again?

I hope the friends you have told are being supportive. I'd like to talk more but don't know who to open up to. I didn't have a bump yet (I heard first pregnancies show later) just looked a bit bloated as my stomach is usually pretty flat. My bigger boobs were probably the main clue but I think being covered up in winter clothing helped stop friends guessing.

Yes they have offered a funeral. We are having a cremation but will not be attending in person. That feels like the right thing for us. I think if I'd been pregnant for longer I would feel differently though. I found out just today that our baby was a girl. I already suspected this because apparently Patau's mostly occurs in girls, but also I just had a 'feeling' when she came out. I instinctively wanted to talk about her using female pronouns.

My partner seems less fussed about a name but it's important to me. I want to call her Leilani. This maybe a bit of cultural appropriation (it's Hawaiian) but I love the meaning - 'heavenly child'. My name also begins with an 'L' so it helps me feel that bit more connected to her. What did you call your little girl?

@Mothalina My friends have all been amazing but I still don't feel ready to start getting back into things. I'm going for 1 on 1 play dates but not ready to go out in a big group yet. I have a few friends who are due to month before I would have been and im really not looking forward to the first time I see them 🥲
We chose a unisex name (Jordan) as they couldn't say for sure at birth so had to wait for the full Amnio results. I had a feeling she was a girl from the beginning and also that something wasn't right as the pregnancy was so different to the first time (I had bad HG with my little boy but it wasn't too bad this time round!)
I do feel a bit better about getting my period but (sorry if it's TMI) I have been getting some random sticky bloody clots the last few days. I'm still taking iron tablets as I lost a lot of blood but I'm thinking about taking folic acid to possibly try and get my body ready to TTC in a few months time. How are you doing?