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Pregnancy

Twin-Twin Transfusion Syndrome

320 replies

MrsStevo · 11/04/2011 15:25

Hi!

I wanted to share my experience of the most horrendous week of my life and find out if there is anyone else out there in the same / a similar boat?

My MCDA (identical) twins were diagnosed as having Twin-Twin Transfusion Syndrome (TTTS) at my 20 week scan last Tuesday (5th April). The doctor established this because one twin was smaller than the other, had virtually no amniotic fluid around it and was stuck to the wall of my uterus, not moving. It had a heartbeat but no bladder could be seen (as no fluid for it to drink / urinate). The other baby was swimming around in waaaaay too much amniotic fluid. The doctor thought I was at stage III of the condition (Stage V being babies have already died) so very serious.

So, I was referred to Birmingham Women's Hospital (I live in Lincoln) and had an appointment there on Wednesday afternoon. The (amazing) consultant - Mr. Bill Martin - scanned me and confirmed TTTS. He said he thought I was actually only stage II but basically said the only chance babies had was for me to have Fetoscopic Laser Ablation Surgery - keyhole surgery where they go into the sac that the bigger baby is in and laser / cut off some of the blood vessels in the placenta that the babies share so both babies have their own half. Odds are 40% chance of both babies surviving and 80% of one surviving. Plus added risk of early labour / waters breaking, infection etc.

Long story short, I was admitted to Birmingham Hosp on Wed PM and had the surgery at about 9am on Thursday. I was terrified - had to have spinal anaesthetic, be catheterised, wear a surgical gown and it was done in a big operating theatre with literally 15-20 people in it. However, my consultant was just amazing - so re-assuring and acted as though it was something he did everyday. He and his colleague were even chatting away about holidays whilst they lasered away.

After the surgery we (DH and I) had to wait for 6 hours before they would scan me again to see if the babies had survived the surgery. At the time, that was the longest 6 hours of my life. We had the scan at about 5pm and both babies were alive - the doctor said they looked healthy and it was the best outcome they could hope for. However, they also said that the next week is a crucial time and, if babies survive the week, then that is really good and indicates they both have a good chance of making it.

So. Here I am 4 days post-surgery with 43 hours until my next scan (they're doing it a day earlier in Lincoln so I can see my consultant there). I feel completely lost and totally in limbo. I don't know what to do with myself (aside from rest, feet up etc etc) but am just trying to stay sane. I'm trying my hardest to keep myself away from Dr. Google so I don't freak myself out by the statistics.

The biggest things I worried about right now:
Will both babies survive? I can't imagine my life without having twins in it now -these will be our first babies, having had a miscarriage last year.
IF they do survive, will they have any neurological damage as a result of surgery - cerebral palsy is a risk. How will we cope if they do?
I'm vegetarian - should I be on protein suppliements to promote healing / good blood quality etc?
Is there ANYTHING I can do to make the odds better?!

Oh. It is just a horrible time. My DH went back to work today (although he wants to be at home with me as much as I want him to be) so I'm alone with just my overactive mind (and a pesky cat) for company.

I wanted to write about this experience on here in case anyone has any pearls of wisdom or wants to share their experience of this horrible condition. Or, if anyone on here happens to be an expert in this condition, perhaps they can pump me full of optimism with a bunch of statistics that everything will be ok?

Thanks for taking the time to read / listen.

OP posts:

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nancy10 · 11/04/2011 16:21

I had the laser ablation treatment in January 2004 at Kings College Hospital for TTTS. I was 23 weeks pregnant and had been showing signs of TTTS from about my 16th week of pregnancy. I was devastated and no-one understood how important it was to me that both babies survived and not just one. The Dr told me that if I decided not to treat the condition, the smaller twin would die and if the bigger twin survived he would be brain damaged due to the excess fluid. So we went down the laser route. A few hours later, I had a scan and the babies appeared well. 10 days later I went for a scan to see if the babies had survived really and both babies were doing well, still a significant size difference but the fluid surrounding both babies was pretty much the same as it had been when I left Kings. I was scanned every week from then onwards and the pregnancy went well. At 34 weeks my waters broke and they were born naturally. Twin 1 was 5lb 6 and twin 2 was 4lb, so a huge difference. Apart from being early and small they were perfect. They spent 2 weeks in special care as they were slow to feed and needed to put on some weight. hey have suffered no effects of the TTTS and next week they turn 7 and are a right pair of cheeky boys. But twin 1 is still alot taller and heavier then his brother. When I had the treatment I asked the Dr if there was anything I could do to help the babies and he said it was now down to nature and to keep my fingers crossed. You have done the main bit in helping your twins survive, now it's just waiting to see if treatment has worked. I was given a 33% chance of them both surviving, 7 years ago. The percentage was partly because it was quite a new treatment then and not many women had had it done.