TTT Second Trimester Loss

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WARNING: THIS POST IS ABOUT BABY LOSS.

In 2010 I became pregnant, from the start it was a different pregnancy from my others, I felt tired and sick and I joked to my husband that it could be twins but put it down to the fact that I was running after an active 2 year old and holding down a stressful job.  

On my first scan the sonographer confirmed that there was a heart beat but the baby was a bit small so maybe my dates were wrong and asked me to come back in 2 weeks for another scan and the downs blood test.  The heart beat was important since my first pregnancy had resulted in a missed miscarriage at 12 weeks.  

At the second appointment we had a different sonographer and her first question was ‘did we know it was twins’, at first we thought she was joking and it was only when she got a scan of them both together did we believe her.  The emotions were unbelievable, it took an hour to stop shaking, it was fantastic and unbelievably scary, we were in the process of buying a house, we had no parental support and yet the idea of 2 identical children was so special, in some ways I felt it made up for loosing my first pregnancy.  The sonographer explained that it was a medium high risk pregnancy they were Mcda twins so shared a placenta, hence identical but had different amniotic sacs, so the risk of twin to twin transfusion (TTT) was not as great as for twins sharing a placenta and amniotic sac but they would still monitor me closely.

As soon as I got home I googled  TTT since I had never heard of it and became worried since there is nothing positive about it, but when I asked about it and what I could do to avoid it the high risk midwifery team at St Thomas’s laughed it off, told me I was worrying over nothing and that they had never had a case at St Thomas’s before. So I put the whole thing out of my mind.

A few weeks later, when I was 16 weeks pregnant I went into the office in regular clothes but by the time I was walking home from the tube after work I had to unbutton my shirt and jacket since my stomach had grown, at the time I thought this was normal, after all I was having twins and I expected my stomach to grow.  Fortunately I was booked in for a scan a couple of days later.  In hindsight I now know a rapidly expanding stomach is a sure sign something is wrong.

We went for our 17 week scan and I was so excited, it was a chance to see the twins again and to find out their sex, our eldest had her heart set on having sisters and so was I, although I would have been happy either way.  It was girls, however there was a problem with one of them, so the sonographer called in her colleague, but downplayed the seriousness so my husband started to collect his things to make it into his office for a meeting.  As soon as we saw her colleague we knew there was a serious problem he looked very senior and he had come very quickly.  We found out later he was the head of the department.  My husband put his bag down and very quickly we were told one twin wasn’t looking well, she was smaller than her sister and had very little amniotic fluid, and we needed to go straight down to Kings, to be assessed by their twin team.  That was the start of a roller coaster day.

At Kings, as soon as I mentioned who I was there to see, I was taken straight in.  I was wired up to a variety of monitors in addition to the ultrasound so they could monitor the blood flow to each twin.  As I lay there I prayed that it would be mild TTT which they could monitor, but as the hours ticked by we knew it wasn’t. My husband phoned both sets of parents, my in laws arrived first to collect our door keys and to pick up our daughter from nursery and my parents arrived from Yorkshire a couple of hours later.

When we had left St Thomas’s the consultant there had mentioned that it would be ok, but if not we would meet Professor Nicoladies  Within 3 hours of being at Kings we knew that the professor had been called, that it was his day off but he was coming into London to see us.  At that point the Kings team explained our options, I could do nothing and both twins would die, I could have laser ablation surgery which involved cauterising the placenta to try and even out the blood flow to the twins, the odds of this were 33% chance both twins would survive, 33% chance one twin would die, 33% chance both would die.  I chose to give the twins a chance.

I was wheeled into an operating room, a camera was put inside me and I got to see my twins playing, sucking their thumbs and waving, whilst Professor Nicoladies cauterised my placenta.  My beautiful twins survived the surgery and I was sent home with a plaster on my back to stop contractions and no advice as to what to do next.  In fact when I had asked what happened next I had been told to continue as normal and come back for another scan in 5 days.  So I continued running round after a 2 year old, this is my biggest regret, it may not have made any difference as to what happened next, but if I had taken myself to bed at least I would not have blamed myself  for doing to much. 3 days later I started bleeding, typically it was a middle of the night so I couldn’t get hold of anyone at Kings so went to A&E at St Thomas’s, again this was a big mistake I should have gone to Kings, again they might not have done anything differently but I’ll never know.  I had a young doctor examine me, he was convinced I wasn’t in labour whereas I was convinced I was.  He did a scan and told us he could only find one heart beat, one twin had died.  Since I was convinced I was miscarrying I was admitted into a gyny ward, (you cannot be admitted to the sands suite at St Thomas’s unless you are more than 18 weeks pregnant and I was 17 weeks and 5 days) where I was left, my waters broke and there were no doctors or nurses around and to top it off there was an elderly lady who was permanently on the loo so I couldn’t clean myself up. Eventually I made it to the loo and the twins slid out.  Fortunately by then my husband had arrived, he yelled for help and the nurses came running, moved me out of the ward and into a separate room.  I was then put on a drip to expel the placenta and my twins were taken away.  I  asked to see them and the nurses asked a midwife to come and dress them, take footprints, their hands were too small and delicate to take handprints, and then they brought them in in a Moses basket, for us to hold, we took a couple of photos to remember them and the Hospital Chaplin blessed them.  To me they were beautiful, they had blond hair, blue eyes and their faces were very similar to their older sister, but they were tiny and not fully developed and reminded me of wax dolls.  We chose to have them cremated at honor oak in a private ceremony, any foetus miscarried after 16 weeks must be buried or cremated, my dad performed the service and the tiny white coffins were brought in.  

Ideally this should have been the end of it, it may seem odd but we went to eurodisney for the weekend as soon as I was discharged from hospital. I was in hospital for 3 days and every moment was horrible and lonely, I did have a few nice nurses but was mainly ignored and the worst thing was when I was asked by the nurse on discharge why there were 2 funeral release forms.  The aim of eurodisney was to try and distract us all but my milk came in, I didn’t expect this and was yet another horrible reminder as to what had happened.  I then had numerous phone calls from St Thomas’s asking me to come back in, not ideal when we were abroad. I was then in and out of hospital for 6 weeks with various complications, which only ended when I had an ERPC, (evacuation of retained products of conception).  

I think of the twins almost every day, in the beginning there was guilt and I still feel this, the what ifs, I went to a counsellor to try and deal with his but her suggestion was to get angry since this feeling would replace the guilt, I didn’t find this terribly helpful.  I have chosen to put the memories into a box in my brain and try to keep it there, I had some npl training at work and they suggested trying to put traumatic things into black and white still images rather that playing them in my mind as live videos and this helped a bit, so I try to blank out the really horrible bits of the whole affair.

 

Other than my eldest daughter who still talks about her sisters who went to play with the Angels no one else talks about them, to all extent they are forgotten about by everyone else.  I like to think they are in heaven looking after us and sometimes I think this may be true, my second daughter was due on the first anniversary of the twins funeral and my third daughter was born on the third anniversary of my twins induction date.

Written by ‘Kate’.
 

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Founder of MGF, Helen is a mum of four who spends way too much time on the interweb and not enough time in bed. She loves wearing her dressing gown, car boot sales and watching TV programmes featuring food. Her specialist subjects include 'how to overfill your car boot' and 'how to avoid dusting'. Follow her at Twitter: @Ginfund, Facebook: @MGFund, Instagram: @mummysginfund and online: www.mummysginfund.co.uk.

6 COMMENTS

  1. Thank you for sharing this sad part of your life with us and raising awareness of signs to look out for.

    From what I’ve read as an outsider, it seems you did do the best you could and put yourself through a lot to give your girls a chance so please don’t torture yourself with the what ifs (although easier said than done).

    I wish you and your family the best x

  2. Bless you Kate,
    we also experience TTTS it’s was very aweful feeling when I was told without having the right information (also searched on Google) our boys were born at 32 weeks and we didn’t need the surgery although the anxiety from week 16 was hard enough.
    I also believe they are in heaven and you are very blessed to have three precious gifts from heaven, I wish you and your family all the best x

  3. Hi Kate, I’m so sorry for the loss of your beautiful blonde babies. And so glad you shared your story with us.

    What a darling you have in your oldest daughter to describe her sisters as dancing with the Angels?! She and your youngest two all have their very own Angels watching over them now and will have that forever.

    We also lost twins (at 12 weeks) and, having now experienced 3 miscarriages, I can honestly say the emotional roller coaster of learning about the twins, planning for caos, looking forward to it and then loosing them is the bumpiest ride I’ve ever been on (and am still on).

    You absolutely cannot blame yourself for anything. Moving around and playing with your daughter, going to St Ts instead of Kings, unfortunately none of that would have made a difference. You gave your daughters the best chance they had but clearly they were too perfect for our world!

    Love and prayers to you and your very special family xx

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