10K for TTTS

Team: Remember Robyn
Team: Remember Robyn
Walk 10K for TTTS · 8 August 2020 ·
Late last year, 2019, I found out I was pregnant. At first a scan showed I was expecting twins, there were twins generations back in the family but none in recent years so I was a little surprised! Although it was a shock (I’d recently given birth to my son in the July) I couldn’t have been happier. For weeks I was adjusting to the idea I was both expecting and that it was a multiple pregnancy. Early on in the pregnancy I had a bit of blood loss and a trip to the hospital for a scan revealed not just two babies but three! I was referred to Newcastle for scans to check the babies were ok and also to see if they were identical. They were! Had they been none identical my anti natal care could have been shared between Carlisle hospital and Newcastle but as it was I was placed under the care of Newcastle RVI foetal medicine.
The babies all had separate sacks but shared the same placenta.
In late January my consultant was keeping an eye on the amount of fluid I was carrying and also there were signs that twin to twin transfusion (TTT) was happening. I was admitted on to the ward. He contacted Kings Cross Foetal Medicine in London for advice and it was decided the fluid was at a dangerous level both for myself and the girls.
Within days I was on the train to London with my mam where Professor Nicolaides Kypros and his team were to perform laser surgery inside my womb later that day. It was the 6th of February. Robyn my smallest triplet was transferring her blood to the others, Zara and Rose, resulting in her becoming very ill and not growing or developing as well as the other two. This also made me add a lot of amniotic fluid and made me balloon to a dangerous size.
After scans earlier in the day I finally went in for my surgery. It was decided that they would laser through the connecting tissue between Zara and Rose thus placing them in the same sac, they kept Robyn on her own as she was significantly smaller so there was a higher chance she may not make it through the operation. They felt should anything happen to Robyn then the other two would be protected. They also lazered the vessels connecting Robyn to her sisters and afterwards they took 2.8 litres of amniotic fluid from me.
Everything went well and the triplets and myself were happy and healthy! I was on the train back within the day.
A week later I was back at Newcastle for a scan. They checked the work of the Professor and were happy to tell me the triplets were doing very well.
19th February 2020 was and always will be the worst day of my life.
26wks pregnant. That morning I felt good and excited to go to Newcastle for a scan to see my girls.
I was sat on the bed waiting and could feel my girls kicking away. I lay on my side whilst getting scanned and Robyn was getting checked.
“Triplet one is not presenting.”
I didn’t understand at first. I didn’t know what it meant but now that I do I wish I didn’t. My smallest triplet Robyn hadn’t made it. Finding out my baby no longer had a heart beat made me feel sick and even angry. My heart breaks every single day and things will never be the same again. My other two girls were both okay and growing nicely.
From the moment we learned Robyn had a fight for survival on her hands she had family, friends and even strangers routing and praying for her to get well and come through it. For such a tiny little girl she has broken so many hearts and left a huge impact on many peoples lives.
Robyn was doing well the week before but she just wasn’t strong enough to keep going. She saved her sisters lives in the process of losing her own and for that she will always be our hero.
TTT’s is a very serious life threatening condition. When I went for laser surgery there was only an 80% chance that 1 of my girls would survive. Myself and my girls were given the best care going. I am broken at the loss of Robyn but also very lucky to have two survivors.
I went in to labour at 30wks pregnant and on the 25th March 2020 I finally got to meet my girls. I had another emergency c-section (I’d previously had one with my son) so I didn’t get to meet them immediately.
When I came round my first thought was Robyn. I needed to see her and spend time with my beautiful sleeping baby. Luke and I broke our heart for our beautiful baby and gave her so much love in such a short time.
After a few weeks stay in special care Zara and Rose were allowed home. Both doing very well and bottling on weight nicely.
In Robyn’s short life all she has known Is love warmth, care, a full belly and company of her sisters.
Everyday I see my girls and remember how lucky I am and how brave Robyn was. Every milestone, birthday, Christmas, Easter, day trips, every single new thing I will do is going to be a constant reminder that my baby should be here doing these things with us and it crushes my heart that she’s not here.
I have photos of Robyn and even though she was not as developed as her sisters she is the absolute double of them.
I will always keep her memory alive and talk about her every day. Robyn is my baby and a very brave little girl.
I will be walking with twins trust who support twins, triplets and more on their journey to help raise not only awareness of TTT’s but also funding to help gather more information and equipment for this deadly condition.
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