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Expecting again after T21 TFMR - anyone else?

(8 Posts)
Catra Sun 03-Dec-17 22:22:31

Apologies for the long post, I didn't want to drip feed.

This August, DH & I learned that the baby boy we were expecting had Down's Syndrome. It was to be our first and much longed-for child and we had to make the horrendous decision whether or not to continue with the pregnancy.

After researching the condition extensively and a heck of a lot of soul searching, we didn't feel that it would be fair on him to bring him into this world. I delivered him and we laid him to rest in our garden at 15 weeks, which we thought was the most traumatic thing we would ever have to experience, but what we couldn't anticipate was the physical toll this would take on me - I was hospitalised 7 times over the next 2 months as I was passing blot clots the size of my fist daily and passing out constantly from blood loss. My womb then became septic and I had to undergo major surgery to remove a growth that subsequently developed. I honestly thought that I was going to die during surgery, such was the blood loss. I even said goodbye to my family before the operation. In the end I pulled through, but in the aftermath I lost my main freelance contract because of how much time I had to take off work which was a big hit financially, as if we needed more stress at that time. The biopsy results on the growth were inconclusive.

We were told by the hospital that there are different types of Down's Syndrome and our baby had the most common type - Trisomy 21, meaning that were was an extra copy of chromosome 21 in every cell. My blood tests put me at a 0.74% chance of conceiving another child with the same condition as opposed to other types of Downs such as translocation, where the risk would be far higher.

I'm 39, and the consultant said that the most likely cause was my age - the older you get, the more rigid the chromosomes become so therefore mine didn't separate before pairing with DH's. She prescribed me a high dose of folic acid (12 times higher than anything you can get over the counter) and told us to wait 3 months before TTC again, the reason being that the egg selected for conception is determined 3 months prior to conception.

At the end of October, DH and I went on a much needed holiday - looking forward to it was the only thing that had kept us sane in the interim months. We had not intended TTC again until those 3 months were up but we got carried away did DTD unprotected during that time, albeit not at a time of the month when I even thought it was possible to conceive. The first time round I had used the ClearBlue fertility monitor religiously and I'd always had my LH surge without fail on day 14 of my cycle. We DTD unprotected on day 8.

Roll on a month and I get a BFP. I was stunned - it had taken us 5 months to conceive the first time round so I'd naively assumed that especially given my age it would take a similar length of time if not longer this time round, instead of happening just weeks after I'd got my menstrual cycle back.

Many of my friends who are far younger than me have been trying unsuccessfully to conceive for years and several are undergoing IVF, so while on one hand while I feel incredibly fortunate to have conceived again so quickly, I'm so worried that I can barely sleep at night.

Only 2.5 months passed between delivering our son and conception, so not the 3 months advised. Instead of feeling any joy about the pregnancy I can't stop beating myself up about not waiting and my naivety.

I'm currently 6 weeks + 4 days, but I have to wait until January before I'm far enough along for any tests to determine whether this baby has trisomy abnormalities or not.

I feel like I'm living in limbo - I'm trying to keep my mind of it as much as possible by absorbing myself in as much mentally taxing work as I can get, yet at the same time I'm physically exhausted with first trimester pregnancy symptoms - sickness, dizziness, cravings, mood swings, needing to sleep a gazillion hours a day, etc.

I'm also preparing myself for going through the worst again - not only the physical, mental and emotional pain of another TFMR, but for its incapacitating aftermath.

As I mentioned, the consultant says there's only a 0.74% chance of this happening again and she says than in her 30 year career she's never seen "lightning strike twice", but then I read the boards on Mumsnet and look at people's blogs and it's made me aware of numerous accounts of this happening twice in a row, if not more, despite the supposedly low odds. I wonder whether this is simply down to incredibly bad odds or something that science isn't yet advanced enough to pick up on?

I feel like I've been living in limbo these past 2 weeks since I got my BFP. The thought of spending another 6 weeks playing the waiting game is enough to drive me insane.

I was wondering whether there was anyone out there who had experienced a similar situation, anyone who had or knows of someone who had a T21 pregnancy and went on to have a healthy child? What age were you? Did you take the high dose of folic acid for 3 months before conceiving again? Even if you don't fit this criteria, I would love to hear from you.

Much love,


Mama0987 Tue 05-Dec-17 13:09:35

Hi Catra
I am going through the same situation as you. I am 39 and 15 weeks but just had T21 confirmed by CVS. So we have made the agonising decision to tfmr the process will start today. I'm completely heartbroken as we have had 3 mc recently too. I want a baby more than anything and undecided to ttc again.
Can I ask how you got test for the probability of this reoccurring in future pregnancy?
I really feel for you in your current situation and hope you get through this next week's ok
Maria x

AveEldon Tue 05-Dec-17 20:42:16

Not sure about the 3 mths wait period - if your eggs are aging why would waiting help?!

I had a successful pg after T21. Annoyingly because my nuchal scan gave a lower chance of problems the second time I didn't get an NIPTY test on the NHS so I spent the whole pg worrying

Catra Wed 06-Dec-17 16:51:05

Mama0987, I'm so sorry to hear that you are going through the same situation that I was in August. I understand what a horrendous time this must be and my heart goes out to you.

My test for the probability of this happening in the future was done by the NHS on the same day as my CVS by means of a blood test and both results were given to me the next day. However, at this point I was already 99.9% sure that our son had Downs because we'd already had the NIPT test - the diagnostic CVS was more of a formality to eliminate that 0.1% chance. It's worth asking your hospital for the test if they haven't mentioned to you.

AveEldon I probably didn't do a very good job of explaining why I was told to wait 3 months. Yes, my eggs are ageing, but the folic acid helps lubricate the chromosomes and so they're more likely to separate. As the egg chosen is earmarked 3 months prior to it being released, taking folic acid for at least 3 months before conception means it's more likely that the egg won't have chromosome problems.

I'm so glad to hear that you had a successful pregnancy after T21. I can fully understand why you were so worried and I'm glad you had a good outcome. They don't offer non-invasive screenings tests on the NHS where I live regardless of the results of the nuchal scan, so even if the nuchal translucency comes up high again (mine was 6.4mm last time) I'll have to pay if I want the NIPT - all I need when I'm trying to save for having the baby!!

pukekos Thu 07-Dec-17 01:20:11

Hi Catra, I’m 35 and in a very similar situation. Had TFMR for T21 last November, exactly a year (to the day) later I got Bfp. Currently 6+3 so in the same horrible limbo. Will be paying for nipt again (I’m not in uk) as will get results of that sooner than combined first trimester screening and I just need to know. Good luck. If you find a way to make the limbo bareable please let me know!

MagicFajita Thu 07-Dec-17 01:38:13

Hi op ,
Different situation but I had a tfmr for spina bifida last summer at 21 weeks. I'm in my late 30s.

I took the 5mg folic acid for a month before trying again. I was pregnant again four months later , we now have a baby boy of six weeks.

I know it's different as in while we will never know the cause of our baby's spina bifida , we do know that it wasn't genetic therefore unlikely to reoccur. Also spina bifida is spotted visually so we had extra scans for detection and was given the allclear at 16 weeks.

Stay strong op and I'm sorry for your loss. I just wanted to post to say that you are not alone in your fears of a repeat of the nightmare you experienced flowers

Take care and many congratulations , I wish you a happy and healthy pregnancy.

pukekos Wed 10-Jan-18 20:53:24

How’re you getting on Catra? I had my bloods taken for NIPT 2 days ago and not coping well with the wait as terrified going to come back positive again. They wouldn’t do my bloods until 11 weeks as only do them on certain days of the week and public holidays meant they were shut the week before. Hope things going well for you.

Gilbert82 Sat 13-Jan-18 19:56:10

Hi, I had a postnatal diagnosis of Down syndrome following the birth of my beautiful baby last year (I was mid thirties when I gave birth and he is my first baby). I declined the screening tests during pregnancy as I would have spent the whole of my pregnancy worrying and researching rather than enjoying generally only get to read and hear about worst case scenarios! My baby is (touch wood!) completely healthy, no issues with heart, bowels, hearing etc
I can’t say I understand your decision to terminate your first pregnancy as I don’t feel I’ve been unfair bringing a child with Down syndrome into the baby was planned, is very much loved and is such a happy little thing my heart bursts with pride and love every day I wake up and see his smiling face beaming up at me....but saying that I am in no way judging you as you had to do what was right for you and your family (but remember there are no guarantees even if your child doesn’t have Down syndrome....any child could have learning difficulties or be diagnosed with something like cystic fibrosis or epilepsy etc).
I think what I’m trying to say is that having a child with Down syndrome is nothing to be scared of, there is so much support and help available now! Please feel free to send me a message if you’d like to, I’m still learning as I go along but am happy to share my experiences with you if it would help smile
Also, huge congratulations on your pregnancy!

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