The impact of TTTS - Lynsay's story

Lynsay's Story Hero

Lynsay was diagnosed with twin-to-twin transfusion syndrome (TTTS) during her pregnancy, and her twins were born at just over 27 weeks gestation.

I have always wanted to be a mum, and to be honest I never worried about anything other than actually being able to conceive. Luckily, it only took about four months, but even that felt like a lifetime. Unfortunately, I didn’t have a very good pregnancy. Everything was fine initially, other than being extremely tired and showing quite early. We went for our first scan at 11+3 weeks, and it was there we found out the shocking news. We were expecting twins.

The same night we announced our pregnancy to everyone, I woke up bleeding at 3am. An ambulance took me to the hospital, where I was monitored for a few hours. We were told that if I was having a miscarriage there was nothing they could do. I was heartbroken. It was New Year’s Day (Friday) and I couldn’t get a scan until the Monday. Those were the worst few days of my life. Luckily the babies were fine, but I continued to bleed on and off until 16 weeks, and it was incredibly stressful.

Then at 20 weeks, we were diagnosed with stage 1 twin-to-twin transfusion syndrome (TTTS). I’d known from the very first meeting with our consultant at 16 weeks that it would happen. I can’t explain how, I just knew. Josh seemed happy with what the consultant told us, but I needed to know more. I researched a lot. It terrified me and comforted me at the same time. I thought it would help me cope if I knew what we were facing.

From being diagnosed, we were scanned weekly, which I found horrendous. I wanted a normal pregnancy and normal scans. Walking into that room every week I would feel sick. At 23 weeks, we were given the news we had been dreading, it was now at stage 3. We had a few options – we could wait it out, do a sacrificial treatment, or be referred to another hospital for laser treatment. After a lot of agonising and research, we decided to go with laser.

We travelled the 200 miles to Birmingham hospital where I was told it wasn’t stage 3, it was only stage 1 and they couldn’t do laser anyway because of the position of my placenta. We left there feeling elated, but I was still anxious. However, our consultant back home still believed it was stage 3 and offered sacrificial treatment again, but we refused. The best we could hope for was that I’d make it to 28 weeks when I could have a planned C-section.

I went on sick leave from work and tried to rest and eat well, doing anything and everything I possibly could to keep them both inside me. I was in agony from all the extra fluid, at 24 weeks it was like a full term pregnancy. Unfortunately, at 27 weeks and 3 days, I discovered blood when I went to the toilet. I was also leaking what I believed to be my waters. I went to the hospital where they monitored me over night.

The next afternoon I was taken for a scan, and they discovered the bigger twin was in distress. I was rushed straight to the theatre for an emergency C-section. It was the most traumatic experience of my life. On 21 April, Harley was born, weighing 2lb 2oz, and his twin Noah followed a minute later, weighing 1lb 6oz. There were no cries. They worked on them for around five minutes – which felt like forever – before we were told they were alive, but they had both been resuscitated.

I like to think Harley (the bigger twin) actually saved his brother’s life, because although it was him showing distress that caused them to give me the emergency C-section, Noah wouldn’t have survived much longer inside of me.

The boys were whisked off to NICU while I was being stitched up, and then I had to go to the recovery room. Josh went with the boys, which I was pleased about. Every part of me just wanted to get up and go see my babies. It felt like an age before Josh came back with an update. I had never seen him look the way he did that night, my big, strong man was completely shell shocked and broken. He couldn’t believe how tiny they were. Noah especially was in a much worse state than we expected.

It was around five hours before I finally got to see them, and maybe it was the shock, or the drugs, or a combination of the two, but I don’t even remember it. I remember being wheeled there in my bed, but that’s about it. I can’t explain what that’s like, to not even remember the first time you saw the babies you so desperately wanted and loved. I grieve that to this day – not being passed your baby to lay against your bare chest, not having that first photo, the loving glances you see new parents share as they look at what they have created together.

Our glances were of panic, anxiety and fear. The true extent of how bad it was didn’t hit me until the next day, which also happened to be on my birthday. It was when I saw the boys for the first time whilst standing up out of my wheelchair. Looking down at them in their incubators, it hit me how small they were, and all I could think was, "How will they ever survive this?" Noah’s eyes weren’t even open yet, but still fused together.

That day the boys’ consultant told us that Noah would most likely die, as his lungs just couldn’t sustain his tiny body. In that moment, my heart broke into a million pieces. I had given birth to two babies, I loved them, and I had to leave that hospital with both of them. Much later, I found out that Josh had actually gone to the consultant and begged him not to let Noah die on my birthday. Every time I think of that I’m reduced to tears.

It was a very difficult journey and a rocky road, but Harley did extremely well and came home from NICU after seven weeks. Noah was in hospital for more than six months, mainly due to his lungs, along with a few other issues.

We had always been told if he survived he would come home on oxygen, but he defied all the odds, and on 29 October 2016, he came home without any oxygen! He had been dependent on some kind of breathing support right up until a week before discharge.

Becoming a mum was a lifelong dream, but never in a million years did I imagine it would happen the way it did. It has been the best and worst experience of my life. It has affected my greatly, and I still mourn the loss of my pregnancy that was cut short, the missed baby shower, the new baby celebrations that should have taken place but didn’t, the fact I had to wait 193 days to take one of our babies home. The list is endless.

However, I know we are so incredibly blessed that they made it and we are now a family of four. It could have been so much worse. Despite being affected by their prematurity, the boys are doing well. They are gaining weight well and are very alert. Who knows what the future holds, but we will deal with it. I just want to give other families hope, that while your babies are fighting you keep fighting too!

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