On the 15^th of October we will be holding an open day to celebrate our 5^th birthday as a Physiotherapy clinic. We will be raising money for the Twin to Twin Transfusion Foundation, Bethan has written a bit (actually quite a lot) about her experience with it and why we are so passionate about raising money for the foundation:

(NB Please note there is also mention of miscarriage so if you think this may trigger you please skip the first paragraph)

I was so nervous fro our 12 week scan, just months before I had been in the very same room having a 12 week scan and being told they couldn’t find a heartbeat, the most devastating sentence I’d ever heard in my life. So understandably when our 12 weeks scan came along, we were terrified. Lying on that table our first glimpse of our baby moving and kicking was very different from the still baby I’d seen a few months before. I was sobbing, just so happy that there was an alive baby. Hang on a minute the sonographer said…… my heart missed a beat she’d found something wrong….. I can’t figure out what’s where she said, ‘let me just check for twins’, ‘OHHHHH there’s two’, as it became obvious to all of us that there were two babies on the screen. Cue hysteric sobbing from me and silence from Alex….. I couldn’t believe it, how had we got so lucky? She found that they shared a placenta and were therefor going to be identical. I was taken off to a room and told about the high risk aspects of the pregnancy but didn’t really take it all in, we were having twins and suddenly a dream we never knew existed was coming true.

Things progressed well up to 19 weeks when I had a routine scan (I was being scanned every 2 weeks), I really wasn’t worried about anything as they seemed to be growing (I felt huge!) and moving. We had already found out we were having boys and were planning our lives with 3 boys within 2.5 years of each other: the chaos, the mess, the fun! However, we (I say we but it just me as Alex wasn’t allowed in due to covid restrictions) were given the diagnosis of stage 2/3 TTTS. I sat on my own in the same room I had done whilst being given my options for how to manage my missed miscarriage, to be told that my babies had a 5% chance of survival without surgery. Even then the chances of them both surviving this surgery weren’t great.

TTTS is a condition that only affects identical twins that share a placenta and is where abnormal blood vessels form allowing blood to flow unevenly between the babies. One baby takes too much blood and has dangerously high blood pressure and the other baby doesn’t get enough blood and becomes dehydrated, all the blood and fluid rushes to the brain and the bladder becomes non-existent (stage 2) and the baby becomes shrink wrapped in its sac. It can happen quickly and is why it is so important that if carrying identical twins you have scans every 1-2 weeks. It is also important to have a consultant who knows what they are looking for as it can be easily missed. We were extremely lucky to have a wonderful consultant at Stoke Mandeville Hospital.

We were urgently referred to the UCL, who rang the next day and gave me an appointment for 2 days time. By this point I was feeling uncomfortable due to build-up of fluid and was so anxious about my babies, after crying down the phone to the midwife she said she would speak to the consultant once he was out of surgery. She rang back and said how soon can you get here, and we left straight away. They confirmed the stage 3 TTTS (abnormal doppler indicating a lack of blood flow in our donor baby). We saw Dr Ruwan who is one of the best fetal laser surgeons in the world and we felt in safe hands. We had packed an overnight bag expecting to be admitted and have surgery the following day. However, he didn’t want to wait and we went in straight away. I was glad I had pushed to be seen sooner; us Muma’s have good instincts about what our babies need.

The whole team really put us at ease, a small incision was made just above my belly button and a camera and laser were inserted, on the screen we caught a glimpse of some tiny fingers and tiny toes which was just an amazing view of my boys. He got to the placenta and read it like a road map following the veins and then he started lasering the ones that were joining, I felt a popping sensation when this happened. Once he was sure he’d got all the blood vessels he took the laser out and started draining the fluid. One of the boys was very cheeky and grabbed onto the end of the suction tube and wouldn’t let go, so he didn’t get as much off as he wanted. Although extremely stressful we were left feeling amazed by the procedure and it was so lovely to get a view of the boys from the inside. They seemed so healthy and active we almost couldn’t believe their lives were in such danger. The surgeon told us the operation went as well as it could have done, and it was now a waiting game. We saw two heart beats on the screen before they turned the ultrasound off which was a relief. Even though I had just had surgery I felt immediately better and less bloated, my tummy had gone down a lot so all that healthy growing we thought the boys were doing was just fluid.

We were given an appointment for 3 days time and discharged. The next 4 weeks are crucial as there is a high risk of miscarriage and we would see if the TTTS has come back. Even if it has worked the boys are very likely to come early, my aim would be 30 weeks and for them to weigh 1kg before delivery, we had a long road ahead, but we felt like we have given them the best chance possible thanks to our amazing NHS.

The next few days were difficult, being sore from surgery but wondering if each ache and pain could be the beginning of miscarriage, the TTTS coming back or even labour was emotionally draining. On top of that I wasn’t allowed to pick Barnaby up or play with him on the floor which is hard for a 2 year old to understand. Finally, Friday arrived, and we headed in to the UCL for our check-up. I was more nervous for this than I had been on Tuesday for the operation. As always though the team put us at ease straight away. The first thing they found on the scan was the babies heart beats, then the donner baby’s bladder, followed by normal Dopplers from both babies and a normal amount of amniotic fluid around each of them. In the consultants words the boys couldn’t be doing any better with no signs of TTTS. We were far from out of the woods, but this was a very good start. I had to stay on strict bed rest for the next 5 weeks and we would go up to the UCL 1-2x a week for check-ups including an MRI scan of the baby’s brains. Our little fighters were doing well, and we were discharged back to SMH. We started to dare to dream of 20 fingers and 20 toes, and adventures with our three boys. We managed to make it to 31 weeks before the boys decided it was time to arrive. They came into the world screaming and I think it’s the best sound I’ve ever heard (we weren’t expecting their lungs to work so well at 31 weeks!). We finally believed that they were real, our miracle boys had arrived. Charlie Reddy Warren and Freddie Ruwan Warren. Their Middle names are in honour of the consultants who saved their lives, and we will be forever grateful to.

They amazed all the doctors with how strong they were, being so small though they needed to be closely monitored in NICU and tube fed as babies don’t get a suck reflex until 34/ 35 weeks. The next 3 weeks were a whirlwind that felt like it would never end but we finally were allowed to bring them home to meet their proud big brother!

They are now 17 months old and are happy, healthy, and so full of life and mischief. We are forever grateful and blessed to have them and so thankful to everyone who played a part in their amazing journey to get here. Many families are not as lucky as we have been and the signs of TTTS get missed with the worst possible consequences. More babies die of TTTS than of SIDs yet there is very little awareness of it not just among the public but in the healthcare system. The TTTS foundation aims to raise much needed awareness and funds for research and families going through TTTS.

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