My TTTS (Twin to Twin Transfusion Syndrome) Story by Danielle Rogerson

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A little bit about our journey…

We found out that we had to have IVF, if we ever wanted to have children. So we started off the process over 2 years ago and we were lucky enough for it to be successful on the first attempt! We only had one embryo transferred back because the quality of the embryo was really good. This embryo then split itself, creating MCDA twins. There is only a 2% chance of this actually happening!

We had the embryo transfer and had to wait patiently to do a pregnancy test. As you can imagine we could hardly sleep as we were so anxious, nervous and excited for what the result would be. We had done the test around which, to our surprise and amazement, was positive! Later on, we decided to pay for an early scan, due to me having a horrific reaction to metoclopramide, which was an anti-sickness tablet to help with my hyperemesis gravidarum. As soon as the sonographer put the ultrasound on my stomach I instantly said “there is two!” …we were all very shocked, including the sonographer! The twins were MCDA twins, which mean they share a single placenta, with a single outer membrane and two inner membranes. After this private scan we saw my IVF consultant a week later for a routine scan at 7 weeks. It was then that she told us that there was already a size difference between the babies, so, from this appointment I was seen weekly through the early pregnancy unit, up until 12 weeks, as the size difference continued to show.

There was talk of TTTS but no confirmation of this.  At 12 weeks we were referred to a foetal medicine consultant at my local hospital, which scanned me and then sat down and spoke to us about TTTS and the possible risks. One option was for me to have an op called laser ablation. We were sat down in a consultation room at St George’s Hospital and we were given our ‘options’. We were told we can either carry on with the pregnancy or possibly lose both twins or we could go through with the laser ablation and lose one or even both twins. The stats given to us for the success rates of the laser ablation were very low so this was an awful decision to let two parents make after receiving such devastating news. We felt as if we had the two boys life’s in our hands.

Between us we decided to get a second opinion for an expert in TTTS and came across ‘The Harris Birthright Centre’, where Professor Nicolaides worked. This at that horrendous time gave us a glimmer of hope that something else could be done, without having any evidence to back this up. I and my partner got the train up to the hospital to see the Professor. He said if we wanted to save at least one twin he wanted to do the laser ablation that day as the smaller twin, who was the donor twin, only had one vein and one artery, as opposed to one vein and two arteries. Additionally this twin had a smaller share of the placenta as well as displaying foetal growth restriction. The odds really were not stacked in his favour.

The laser ablation went as well as it could have. The Professor was pleased with the outcome and we were sent home that evening. From then on the waiting game was awful. We had to just sit tight and see what happened with our boys. I was constantly in and out of hospital for several different reasons, each week my smaller twin would gain around 25g. Some weeks his Doppler was good and some weeks they were bad. Each scan would be a different emotion, some happy and some extremely sad. It was like an ongoing roller-coaster. We were constantly told the laser ablation was to save the bigger twin and my smaller twin may not make it due to him not growing and the Doppler not being positive. As you can imagine this was heart-breaking to hear and not something that parents expecting twins ever want to consider.

The TTTS had started to come back. Unfortunately the laser ablation does not guarantee that the TTTS will not return. I then turned my head to my partner and said “I know she wants to deliver”. As predicted, the words then came out of my consultant’s mouth, “I am really sorry we have to deliver”.  She had decided the best thing to do was to deliver both boys, but there were big risks involved doing this as the smaller twin was only weighing in at 575g.

My local hospital was a level 2 NICU so they could not deliver there due to the size of my smaller twin.  After calling around all level 3 hospitals within London and outer London, Portsmouth Queen Alexandra had two cots available for my babies to be born. With a matter of urgency, I was blue lighted from Frimley Park Hospital to QA Portsmouth Hospital with the intentions of delivering the babies by c section that night. Unfortunately, there were a few complications, which then led to a lot of delays and a long evening of monitoring both of the boys on the CTG monitor.

On Friday 15th September at 9.38am our beautiful boy Teddy was born weighing 609g (1lb 4oz) and at 9.39am, his brother, and our gorgeous son Ronnie was born weighing 1.42kg (2lb 13oz) with two large teams of professionals on hand to immediately work on our vulnerable boys. After managing to settle the twins our boys were transitioned to NICU. Ronnie was in NICU in Portsmouth for 46days and was discharged on Monday 30th October 2017. On the same day Teddy was transferred back to Frimley Park Hospital and still remains there in NICU where we hope, real soon he also will be discharged and coming home to be with his brother and Mummy and Daddy.

 

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