Lynsay got in touch with The Smallest Things after her twin boys were born premature following Twin to Twin Transfusion Syndrome (TTTS).
“I’ve spent a long time wondering how I can raise some awareness, I really want to get something positive out this horrendous experience. That is why I want to share our story….”
Lynsay starts by telling us a bit about her pregnancy:
Unfortunately, I didn’t have a very good pregnancy. Initially, other than being extremely tired and showing quite early everything was fine. We went for our first scan at 11 + 3 and it was there we found out the shocking news we were expecting twins! After the scan we announced our pregnancy to everyone but that same night at around 3am I woke up bleeding.
An ambulance took me to 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 and I couldn’t get a scan until the Monday. It was the worst few days of my life. Luckily the babies were fine, but I continued to bleed on and off until 16 weeks. As you can imagine it was incredibly stressful.
Twin to Twin Transfusion:
At 20 weeks we were diagnosed with stage 1 twin to twin transfusion syndrome. Not many people know what TTTS is, I have to admit I didn’t. TTTS is a disease of the placenta that affects around 10% of identical twin pregnancies. There is a donor twin (Noah) and a recipient twin (Harley). The transfusion causes the donor twin to have decreased blood volume. This in turn leads to slower growth and little to no amniotic fluid.
Initially I thought this meant that only the donor twin was at risk but actually the condition can be fatal for both twins. The recipient twin becomes overloaded with blood which then puts a strain on their heart and can lead to heart failure. There are 5 stages of TTTS, stage 3 and upwards are the danger points with stage 5 being the death of one or both babies. It’s a truly awful disease that takes many babies.
From being diagnosed we were scanned weekly and 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 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 feeling elated, but I was still anxious.
Our consultant back home though still believed it was stage 3 and offered sacrificial treatment again, we refused. The best we could hope for was I’d make it to 28 weeks when I would have a planned c section.
“… the most traumatic experience of my life”
Unfortunately, at 27 + 3 I discovered blood when I went to the toilet. I was also leaking what I believe to be my waters. I went to 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 theatre for an emergency c-section and it was the most traumatic experience of my life.
On the 21st April Harley was born weighing 2lb 2 and his twin Noah followed a minute later weighing 1lb 6. There were no cries. They worked on them for around 5 minutes (felt like forever) before we were told they were alive but they had both been resuscitated.
I like to think Harley saved his brothers life; although it was him showing distress that caused them to give me the emcs, Noah would not of survived much longer inside of me.
Neonatal Intensive Care:
“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.”
The boys were whisked off to NICU while I was being stitched up and taken to the recovery room. Josh went with the boys which I was pleased about. I wanted with every part of me to get up and go and see my babies, but obviously I couldn’t. I can’t even say how long it was until Josh came back with an update, but it felt like an age.
It was around 5 hours before I finally got to see them and to be honest I don’t even remember it – shock, the drugs or maybe a combination of the two? I know I was wheeled there in my bed, but that’s pretty much 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.
The true extent of how bad it was didn’t hit me until the next day, which also happened to be my birthday. It was when I saw the boys for the first time whilst standing up out of my wheelchair. Looking down on 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, still fused together.
The consultant came to my room and told us that Noah would most probably die, his lungs just couldn’t sustain his tiny body. In that moment my heart broke into a million pieces. I had twins, I had given birth to two babies, I loved them, I had to leave that hospital with both of them. I found out much later that Josh had actually gone to their consultant and begged him not to let Noah die on my birthday. It reduces me to tears every time I think of that.
A Rocky Road:
It was a very difficult journey and a rocky road but Harley did extremely well and came home from NICU after 7 weeks. Noah was in hospital for more than 6 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 the 29th October 2016 came home and without any oxygen! He had been dependant on some kind of breathing support right up until a week before discharge.
Blessed – A Family of Four:
I know we are so incredibly blessed that they made it and we are now a family of FOUR.
On the whole the boys are doing well; obviously they are still affected by their prematurity and the TTTS, and Noah is even further behind in milestones due to his long hospital stay – but I want our story to give hope other families.
TTTS can be a devastating and traumatic diagnosis, with the huge amount of uncertainty that comes with it. I hope through our story we can raise awareness and offer hope and support to other families.
With thanks to Lynsay Fletcher for sharing her story – if you have a story to share contact The Smallest Things at firstname.lastname@example.org
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