Hi all, I just wanted to update you and put something out there as I have searched and searched and can barely find anything. My partner and I after 5 rounds of ivf with my own eggs used donor eggs for our 6th round, all was going well bar some early bleeding and every early scan showed good growth and a heart beat. We then got to our 12 week scan this week (I was actually 13 weeks) and had the heart breaking news that the baby has something called fetal Megacystis and the umbilical cord only has 1 artery which all points to either trisomy 13 or 18 (non compatible with life) so we are likely going to have to terminate. We are waiting on test results but consultant said we are to prepare for the worst and even if not chromosomes baby unlikely to make it passed 15 weeks .
if anyone ever see’s this with a similar issue please do reach out because I literally couldn’t find anything online as it is so rare and have since done a lot of research and actually in certain circumstances there is more than hope than we have so would be more than happy to talk.
I also am so mad at myself as we didn’t get the embryos genetically tested as assumed being a young donor we would be absolutely fine; so would highly recommend getting donor eggs and embryos genetically tested to save any heart ache we are going through!
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Franjohn
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So sorry to hear that. I totally understand your feelings, as I had a miscarriage at 9weeks last year. That is the entire point I want to check the embryos with PGTA before transferring. I want to know some more chromosome information about the embryos. I strongly believe it is a necessary process in my case (based on my last miscarriage experience)..
Do you have frozen embryos left? If you have you can request the PGTA for your remaining embryos. I hope your clinic will offer you the best advice. Thinking of you, big hug X
thank you! Yes we have 2 left so will get those tested and then if they are abnormal will have to see if my partner is a carrier! Just can’t believe this is happening and so mad at myself for not getting them tested!! Xx
So very sorry you are going through this. I agree with testing embryos when using donor eggs because if the problem comes from the sperm, then young eggs won't make a difference. Not to mention, even young eggs can have issues. Good luck with everything.
I had a TFMR last year at 17 weeks for Trisomy 13, it was heartbreaking.
Don’t be mad at yourself, it’s one of those random things that no one can predict. Even testing embryos isn’t 100%. It’s still unfair, devastating and just all round horrible though I know.
Happy to answer any questions you have, but don’t think the artery was a problem in our case. They didn’t see anything on scans, we found out doing NIPT. When I gave birth he looked perfect but had an extra finger on each hand which was a result of Trisomy 13. I ended up with an amnio but had to wait until 16 weeks which was a long and bloody awful wait but did give me confidence I was doing the right thing in terminating.
Pink elephants is a good source of help and information- they have a Facebook page for TMFR - and someone on there will most likely have some info for you.
Sending you lots and lots of love - you will get through this but it takes time. A year and a half on I’m doing another IVF cycle. I am not going to test - I’ve gone back and forward so many times but it’s not guaranteed and I’m worried I’ll lose a good embryo.
I am really sorry you have to go through all this. This is unfair and I pray to God to help you out of this situation.While I didnt have donor eggs, I did have single artery in my IVF pregnancy and I gave birth to a healthy baby.
So its definitely not the single artery thing. Just wanted to share this so that you have some real life example with one aspect of your situation.
thank you so much; and I so sorry you went through that. It’s such a shock isn’t it. I just feel a bit broken at the moment as I’m sure you did too. We have been offered the genetic counselling which we will absolutely take and see where we are at after. We are waiting on results (I will be 14 weeks then) consultant has said given all other findings she is absolutely sure it will be either trisomy 13 or 18. Thank you again; once we know where we are at I May went get in touch if you don’t mind xxxxx
Hi Fran. I'm so sorry to learn this. I went through a similar thing a year ago. We discovered at the 12 week scan that something was very wrong and then had to go through a gruelling wait for test results. We terminated for medical reasons, our baby had trisomy 18, it was a devastating time especially after going through so much to get to that place. Like you, I also had a couple of scans prior to the NHS one and at each scan was told things looked great, baby was a few days behind but nobody was concerned, I felt this lulled me in to a false sense of security when I later found how serious the issues were. Please please though try and be kind to yourself through this and I hope you have people around you supporting you. The waiting for test results is just awful. Please try not to be mad at yourself, you do not deserve that, you deserve kindness and support at this impossible time. Its good you are reaching out, i found the TFMR Mamas group incredible xx
thank you so much, I will absolutely look at that site. Gosh you poor thing, it’s just hell isn’t it. I am absolutely taking comfort in these comments so thank you so much. My partner and I just had no words; we were absolutely lulled into a false sense of security. It just seems so unfair given all we have all been through already for that to happen. My main worrry was that the baby was in pain but the consultant reassured me the baby has no clue at all which was a huge relief xxx
So pleased you can take some comfort in these messages at this difficult time. Its very traumatic and words can not describe the complex emotions. Feel free to get in touch if I can be of any help. Obviously I hope for you that you have some better news from your test results. I know the wait is crippling. If you need it, TFMR Mamas have an online group that you can go to once a month, as often or as little as you like, no charge. I found this so useful in helping me share my story and process my grief and it really enabled me to feel less alone as others also shared their stories 💔 truly heartbreaking but such overwhelming support xx
Please don’t be angry at yourself. I’ve pushed so hard for the same and I’ve had two clinic now say they won’t test due to a young donor. They say the risk to the embryo is too great compared to the likelihood of issues. This is not your fault. Thinking of you xx
Sadly this happened to me last year too, my baby was suffering with 2 issues and I also found out at my 12 week scan from a blood test.
It was awful and I did it alone with sperm donor.
It was the hardest thing I’ve ever had to do and one year on I am that but stronger.
This will be traumatic for you and right now all you can do is get thru each day.
Try and get as much support as you can and know that you wouldn’t want baby to suffer all their life 😓
My heart goes out to you TMFMR Mummas and Arc are both very helpful.
Arc based in the Uk / London we’re absolutely incredible just calling them up and crying on the phone for an hour having someone that understands and deals with this for their job was much more beneficial than my Councilling.
You can call them now while it’s new and trying to piece what’s actually happening together. As I know it feels like a blur for you m.
I’m sending healing during this very sad time for you and your partner.
I’m so sorry for your loss life will go on and you will once again smile.
I’m so sorry you’ve been through this and without a partner, it really is just horrendous and there are no words really. My midwife gave me the details for ARC so I will absolutely contact them and look at the TMFMR mummas too. Thank you for the lovely message xxx
I'm so sorry Fran 😞 This is just everyone's worst nightmare. It's horribly unfair. You've been horribly unlucky. But please please don't blame yourself. The debate over testing vs not is not a straightforward one, there are arguments both ways and people (including specialists) have such different views. I'm sure many many people don't test with young donors. Sending you so much love in this dark time. Remember that it won't always feel like this. You'll come through this, make sure you use all the support and love around you xx
hey, I am so sorry to read this, one thing to remember though is sometimes there are spontaneous mutations so it is not anyone’s fault as such - ie it has not been past on from anyone it just happens. Xxx
Hiya, I’m so sorry to read this 😔 We too went through a TFMR in June last year as we found out at our 12 week scan that our baby girl had Edward’s Syndrome. I don’t think I have ever felt as broken as I did for those months afterwards and it was a very dark time. I also was so cross with myself for not getting the embryo checked but in hindsight, I wasnt advised to, so just assumed everything would be okay.
I am now 34 weeks pregnant with a PGTA tested, DE baby and everything has been fine so far.
Have faith and hope - you will get through this time. Look after yourself and give yourself time to grieve.
thank you so much for lovely message. It’s been really comforting seeing all these stories and knowing I won’t feel like this forever. I’m so pleased you are getting your happy ending. Xxxxx
I just wanted to say I’m so sorry you’re going through this. Just not fair at all. I hope you have good support around you and can put looking after yourself first over the next few months. Sending hugs.
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