The wonderful Sadie – May has been kind enough to share her story with us all on her experience with TTTS. We really hope reading others stories will help some other twin parents maybe experiencing this.
We found out we were expecting twins on 13th July 2016 at our 12-week scan at our local hospital in Weston-Super-Mare. We were sent to a specialist hospital St Michaels in Bristol the next day for confirmation that the babies were sharing a placenta.
Our specialist Fetal Medicine consultant and his registrar were very thorough during the scan. They measured everything you could imagine from amniotic sac sizes, heart dopplers, bladders, length and more. Everything was fine that day and it was confirmed they were MCDA (monochorionic diamnotic) twins.
They explained that we would need regular scans to check they weren’t developing amongst other complications, Twin to Twin Transfusion Syndrome (TTTS). This is a rare condition affecting only 10-15% of identical twin pregnancies that share a placenta. I had to look out for signs such as bloating, sudden weight gain, feeling breathless, having palpitations, increased thirst, spotting, early contractions, leg/back pain. If we were unlucky enough to get this rare condition it could be fatal for both babies unless caught early, the treatment however was very risky, and the outcome uncertain. We were told we’d have to come back for scans every 2 weeks. This seemed excessive to me at the time, seeing as though my pregnant friends only received 2 or 3 scans during their whole pregnancy. Still at least we’d know the whole way through how they were doing.
Bank holiday Monday 1st August came around and off we went to our next scan. The scan as before took a long time but things seemed different this time. There wasn’t much chatter from the Doctors, and they seemed to be concentrating a little more and discussing things between themselves.
I, as always was feeling nauseous, this was heightened by motion sickness getting there and the worry of the scan. At one point I had to ask them to stop the scan so I could sit up & have a rest from the pushing on my stomach, someone grabbed me a sick bowl. After a few minutes, I felt slightly better so I laid back again so they could continue, with the sick bowl ready in my hand in case I needed it again.
At the end, we got asked to follow our consultant into another room. I knew for sure at this moment everything was not ok. He explained that they were showing signs of TTTS and were at Stage I, this meant that the amniotic sac surrounding Twin 1 was measuring a little bigger than that of Twin 2. He advised us to come back on Friday 5th August at 7am for another scan, TTTS can sometimes sort itself without intervention when at Stage I. I was warned not to eat much on Friday morning in case I needed surgery. The rest of week passed by as a blur, I cannot remember anything about it, except that it dragged by so slowly.
Friday 5th eventually came by and again off we set for our 40 minute drive to Bristol. I felt sick with worry and hardly spoke to my husband as he drove. Our scan unfortunately showed our worst fears, we had accelerated to Stage III TTTS. Our options (or so they called them,) were to terminate the pregnancy; do nothing but they’d both die; or have a procedure called laser ablation under sedation whereby they would use a laser to sever the blood vessels in the placenta connecting the two babies. This had a lot of risks, but it was really our only option, as we were not prepared to give up on them!
The risks included a high probability in one or both babies of death, abnormalities, complications, deformities, premature labour and recurrence of TTTS. The premature labour could happen at any time after/during the procedure the Doctor explained but unfortunately if they came at 16 weeks gestation they wouldn’t survive. The consent form was so full of risks that there wasn’t any more room, so the writing filled up the spaces at the sides of the page.
Of course, I signed it, I had to. We waited for a long time in that little room whilst the nurses set everything up and the Doctor had other urgent scans to complete. I was put on some intravenous fluids and given various drugs. We got moved into a private room that was for day patients and waited. My husband called my mum who arrived a couple of hours later to sit with me. Eventually some time in the afternoon a nurse came by and injected my thigh with Pethidine. Only a few minutes later I felt like I’d had one too many wines except without the merry feeling that goes with it and started vomiting into various sick bowls. I felt dreadful, the nurse was worried I wouldn’t be able to keep still enough for the procedure so hurried off to get me an anti-sickness injection.
Thankfully this worked well, and I was practically lifted (as I was so wobbly) into the next room. Although affected by the drugs, I remember this part very clearly. There were machines galore, trolleys with equipment laid out, monitors, nurses, consultants (mine and an extra specialist for a second opinion) and a bed in the centre. My husband was able to stay, thank goodness to give me support and he helped me onto the bed. I had to lie on my side but lean back without going onto my back, at a diagonal angle. This was so hard to maintain so the nurse propped me up with lots of pillows. My stomach got exposed and a last scan to show the Doctor where to incise, he marked the spot on the left of my bump. I got cleaned and prepped then came the first incision and the laser inserted. I did not feel any of the procedure including the initial incision, except some pushing and pulling. Someone else held a scanner probe on my bump to allow the consultant to see what he was doing. The lights went out and I could see the tip of the laser navigating my insides. The consultants were discussing during the procedure which vessels they thought were the offending ones. I must admit it was interesting to see the laser fizzing on the screen at different points of the placenta, although I mostly stared at my husband or closed my eyes wishing for it all to be over.
There was a moment where everyone in the room gasped and held their breath which made me suddenly open my eyes. A tiny little hand appeared on the screen narrowly missing the laser. The consultant waited a few moments and thankfully the hand disappeared again. I remember the consultant making a joke of it and said if I “could ask them to sit still please” then he carried on. Due to the extra fluid he carried out an amniocentesis also and a sample of this would be tested for Downs Syndrome.
I’m not sure how long the procedure took but it felt like forever (I later learned to be approximately 40 minutes). I was completely exhausted and don’t remember getting home. I know that my husband and parents helped me into bed where I fell asleep instantly which is where I stayed for about 24 hours. I was booked in for another scan on Monday to check if the procedure had gone well and see how the babies were.
I was very sore the next day but that didn’t bother me. It was the worry that was all consuming, were they dead already? were they deformed? I thought if I could just stay still things may be alright. My parents came back the next day and I had a good talk with mum. She said I’d feel much better if I managed to have a wash. I had a sink wash and she washed my hair over the bath. I did feel a little better but needed more rest so back to bed I went.
Monday finally came, the usual horrendous journey and wait in the waiting room followed. This scan I’m happy to say was ok but it was still early days. We had to come back in 3 days. It carried on this way for a month with weekly scans to ascertain whether the babies were still ok and to check to make sure TTTS had not redeveloped. Eventually we went back to having scans every 2 weeks again. I managed to hang on until I was 32 + 4 on 27th Nov 2016 I went into premature labour. I had to have an emergency c-section to reduce the risks to the babies in delivery arising from the procedure I’d had but this went well. Twin 1 (the recipient) weighed 3lb 5oz, had no other health concerns except needing help with his lungs to develop and stayed in NICU for 4 weeks. Twin 2 (the donor) was 2lb 8oz; he unfortunately had an ileal atresia (a hole in his gut). On his second day of life he needed emergency surgery to repair the hole. He went on to have another surgery a month later, so he stayed in NICU for 8 weeks altogether.
It was, hands down, the scariest thing I’ve ever been through, but we all got through it against the odds. I will be forever grateful to the amazing team at St Michaels who spotted this awful condition when they did and the amazing procedure they performed, that went on to save my twins lives. I am also grateful to the neonatal team who cared for our boys once they were born and performed unbelievably complex procedures on the smallest of babies and the nursing and care staff that were incredibly supportive throughout my time there.
To follow this amazing families journey please follow along at @mrs_twin_mumma.