TTTS – This pregnancy has no future…

My story… by Katie Rhodes


We had been told that we were expecting mc/mz twins ( not really understanding that this put us at any more at risk of problems)  and so when we were told that we were to be monitored every 3 days with scans and traces we thought this was normal procedure.

However when at 29+6 wks   I went to the hospital to be monitored as usual,  a doplar scan detected  a problem with the blood flow to the smaller twin. No one in the scanning room said anything to me about it, the first I heard of it was when the nurse told me they had called for an ambulance, but did not yet know where I was going.

I was going to probably have the babies today but I couldn’t have them here as they were too premature and could I please bend over to have a steroid injection in my bum! Of course I burst out crying and couldn’t take it in, this type of thing happened to other people, people on the TV not me!

After about an hour of  ringing round by the nurses, I was finally accepted by Crewe Hospital, having been turned down by every hospital in the Midlands, as nowhere had 2 neonatal intensive care beds.

When I got there (blue lights flashing ,and my husband following behind in the car) a consultant scanned me straight away and said there was nothing wrong ?! He could find no reason whatsoever to get them out now. To be honest I was so relieved they were ok, I never thought to question him, I just assumed my own hospital was being over cautious. I wanted to believe they were alright and so I said thanks and thought that was the end of it, they kept me in the night and I went home the next day.

When I got home I had a look on the internet and found some info on ttts, it sounded like what was happening to me, but why had no one mentioned it? I would ask them at my next app, I decided.

When I went for the next check up a few days later at my local hospital, my husband came but we were not too concerned, I lay down to be scanned but again there was a problem, this time it was worse, again an ambulance was called, this time were going to Leicester Royal, (much nearer to us, 30 mins way).  I started to get some pains in the ambulance so I was taken to the delivery ward and monitored, the pains eased over the next few hours.

We didn’t get to see the specialist until the next day, which gave us hope that it couldn’t be that much of an emergency, although I was monitored the whole time.  It was gone five o’clock when we walked in to Dr Howaths office, he explained that he would not speak to us until he had completed the scan. After about five minutes of silent scanning he said ‘right you have something called ttts and it looks like its been grumbling along for a while.’

He was very matter of fact which I appreciated and explained that it was at a stage by which if we left them in, they would not be able to survive for more than a few hours, that there was no choice but to get them out now.  His exact words were ‘this pregnancy has no future‘.

We were stunned by the news but he went to great lengths to show us with the scanner the smaller twin stuck up to the side with no water, and the babies bladders, he also said what a good chance they had at 301/2 weeks, so there really was no decision to make.

Katie_birthstory1_1At 8.03am and 8.04am Lucas Boston and Harvey Thomas were born weighing 3lb 3oz and 2lb 15 oz delivered by c section by Dr Howath to whom we owe so much. We didn’t get to see them, but we were very quiet and heard them make a small cry each, which we had been  told Harvey wouldn’t do.

It was quite a few hours before we heard anything from nicu, but then my husband was allowed up to see them and in the early hours of the next morning came down with 2 photos.

They struggled in the first few days, they were on ventilators, with so many tubes and wires and problems, Within two weeks Lucas was breathing on his own, and seemed to have turned the corner, it took Harvey a little bit longer but he got there in the end.

Lucas and Harvey spent their first 8 weeks in hospital, and I will always be sad that I didn’t get to spend that time with them, watching so many other mothers walking out those hospital doors before me with their babies was difficult, but my day came on Oct 2nd 2004 when my boys came home.

Thanks for reading, I hope this has given you hope if your babies have TTTS,


Katie, Lucas & Harvey

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