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Max and William

After trying for nine months and worrying I would never get a positive pregnancy test, I fell pregnant in September 2011 and was over the moon. We went for our 12 week scan and I was absolutely convinced the sonographer would say there was nothing there or that the baby had died. I lay down and as soon as she put the scan thing on my tummy, we saw a baby! I couldn’t believe that that little baby on the screen was in my tummy! The sonographer was quite quiet and she moved the thing around quite a lot. I asked if everything was okay. She said to hang on a second and I said ‘Oh my god, is there two?’. She said ‘I think there might be’. I couldn’t believe it and kept saying ‘Oh my god’ with my hand over my mouth. I clearly remember her moving the scan over and seeing the other baby. I literally couldn’t believe it. Tom, my husband, said that the second baby looked small and she said he did compared to the other one. She said she could see the membrane between them and it looked  like a shared placenta. She mentioned that they were probably  ‘mono-zygotic’ and I started to get excited that they were probably  identical twins. We asked about the Nuchal Translucency Scan because we wanted to have it, but she said we couldn’t there and then because it was twins and we had to have some ‘counselling’ first in case there was something wrong with one baby and not the other. She  printed us two pictures, one of each baby and we were told to go through to the ante-natal clinic, where someone
would see us. We went through both feeling a bit dazed and giddy with excitement. We spoke to a midwife, who talked us through the implications of a NT scan for twins and gave us some leaflets to read. We then tried to book a NT scan but couldn’t have it there and then because they had no appointments. With hindsight, I would have insisted they fitted us in. We were given an appointment exactly a week later at another hospital, because it was the first one we could get.

We had a week of excitement telling people we were having twins, looking at twin prams, googling frantically to find out as much as we could about twins who shared a placenta. I clearly remember the first time I read about something called Twin to Twin Transfusion Syndrome and it jumped out at me. But I was so excited and happy, I didn’t really think it could happen to us and we hadn’t had it confirmed that they were sharing a placenta so I brushed it to one side.

At 13 4, we arrived at the hospital for our NT scan. The twins were both being a bit awkward and wouldn’t get in the right position for their NT to be scanned so they sent me out to walk around for a while. We went back in and she got lots of good pictures of the babies, including them together and their heads together. She confirmed there was a significant size difference, around a week and half. Eventually she managed to scan the bigger baby’s NT and found it was big. She couldn’t scan the little baby’s. She told us she thought it was a fused placenta, which meant that it looked like they weren’t identical and that there was probably something wrong with the big baby and she didn’t know about the other. We were absolutely heartbroken. She said she would call our hospital and get us an appointment to see someone there who would talk to us about the next steps. We had to wait for ages while she got hold of the other hospital and I was crying but trying not to. I remember standing in the corridor talking to her and tears just leaking out of  my eyes.

We arrived back at our hospital and talked to a senior midwife called Shirley, who explained what the big NT could mean and said she wanted us to be seen by specialists in London the next day. We were very  upset but glad that they were taking it seriously and that the hospital in London could see us the next day. That afternoon and evening was horrendous. I just cried and cried while Tom tried to look after me. It felt like a very dark day.

The next day we got the train into London and found our way to the  hospital, UCLH. We were led into a room and scanned for a long time by a doctor, I think he was called Fred, who was very abrupt with us, telling us to sssshh when we asked questions. He confirmed that they were definitely sharing a placenta and were identical twins. He said that the big NT could be an indicator of TTTS. He said he needed to discuss everything with another consultant and that I should have some blood taken and then come back in an hour to see them. I had the blood taken and Tom and I went for lunch. We were googling TTTS and it felt more positive than it had the day before, because it was less likely there was something genetically wrong with the babies. We went back to the hospital and saw Fred and another consultant, George. George was very kind and he spoke to us about everything. He said that the babies were almost certainly suffering from TTTS as one baby was smaller than the other and had less fluid. He explained what the condition was. We were told that there was laser surgery that could help but it couldn’t be done until at least 16 weeks. At this point I was 13 5 days pregnant. George told us that if the babies survived the next two weeks, which was fairly unlikely, then we would be able to have the surgery. We were basically told to go home and wait to see if our babies died. It was devastating. George booked us an appointment for two weeks later and we went home. Shirley at our hospital had asked us to ring her and let her know what was happening. I did so and she said we could come in to have scans over the next two weeks to check the babies were alive.

Over the next two weeks we had three scans at our local hospital and each time we saw two heartbeats and wiggling babies, we were able to breathe again for a short while. Everyone was very kind but it was a very fraught two weeks. I had researched TTTS and put myself on a bit of bed rest, well sofa rest really. I continued trying to eat really well and be as healthy as possible for my babies.

At 15 6 we were back at UCLH. George scanned us and confirmed that both babies were alive and, although the little baby had less fluid, their blood flows were stable. We were completely geared up for the laser surgery and it felt weird to be told to go home and come back in a week. I wanted the surgery because it meant that something was being done to help them. So while it was good news they were stable, it also meant more waiting was in store. Christmas was hard and not very festive but we tried to be cheerful and positive as much as possible.

On Thursday 29th December (16 6) we were told the same. The babies’ blood flows were stable and we were sent
home. I started to believe that my babies might remain stable until they were viable. It felt crazy that if we got to 24 weeks, they might induce me and I’d have twin babies in 7 weeks’ time. The next day, New Year’s Eve and our first wedding anniversary, we went for lunch. I was in a lot of pain with my back and spent the afternoon with a hot water bottle, trying to relieve the pain. I didn’t know why and thought it was maybe being pregnant with twins or maybe the TTTS. I think I was blocking out that it was the TTTS and didn’t think about it too much. For some reason, George had booked our next appointment for the next Tuesday, not Thursday as was now usual.

On Tuesday 3rd January (17 4), we arrived at UCLH quite optimistic, thinking we were going to be told the babies
were stable and to go home again. Sadly, that was not the case. The blood flows to the little baby had reversed and we now needed laser surgery. George also told us that it looked like the little baby had water on his brain. This was another huge blow but we had to put it to one side as getting their blood flows sorted was more important. He also thought that the little baby was being affected by SIUGR (Selective Interuterine Growth Restriction) and had access to less of the placenta I had asked George a couple of times before if he could tell us if the  babies were boys or girls but he couldn’t tell. After that scan he said he thought they looked more like boys than girls. This was a little ray of sunshine amongst all the bad news.

They didn’t do laser surgery at UCLH so we were sent across London to King’s College Hospital. We got a taxi and it
took quite a long time. When we arrived at King’s, it was noisy, hot and chaotic, nothing like the calm and modern UCLH. The day was a complete nightmare. We arrived there at around 11.00am and spent most of the day sitting in an uncomfortable and crowded waiting room, waiting for the ‘famous’ Professor to turn up so he could do our surgery. I had blood taken and the research fellow who was ‘looking after us’ butchered my arm, spilling my blood all over the carpet. It all felt disorganised and unprofessional. I was scanned for ages and we saw the twins really moving and interacting with each other. It was amazing to see, despite the circumstances. The day was very traumatic and by 5.30pm when we were taken from the horrible waiting room into the room for surgery, I had been crying intermittently for what felt like hours. The surgery was awful. The room was full of people and it didn’t seem very serious – I was just told to roll up my dress to have the surgery. The Professor was a brash and rude man who made inappropriate jokes and did nothing to put us at ease. When he finally started the surgery, they found that my amniotic fluid was full of blood and some clots, which made the surgery more complicated. He managed to complete the surgery however and seemed to be pleased with the result. They reduced the fluid around the big baby and I felt more comfortable. My womb started contracting around where the needle had gone in and it was very painful. Despite this, they made me get up off the bed and onto a wheely office chair because they had no wheelchairs. I was wheeled into the room by Tom and the research fellow. The same room that had my blood all over the carpet. She took my blood pressure, then said she’d be back in half an hour to take it again. I lay there for ages, trying to get comfortable and waiting for her to come and take my blood pressure again. She didn’t turn up for ages and Tom kept trying to find  her. When she eventually did turn up, she took me to a scan room to see how the babies were. I was freezing and couldn’t stop shaking. She scanned me and both babies were there, with beating  hearts. They were lying together, which was very sweet. We were then told we could leave. By this time it was around 8.30pm on a cold January night. We had to go out and find a taxi because we couldn’t book one. Eventually we got one, which, took us to my great aunt’s house in Camden, North London where my parents were waiting for us to drive us home. The journey to Camden and home were quite painful and I felt each bump in the road.

The next day I called UCLH to make an appointment for another scan, as I had been told to do. The midwife was
very kind on the phone and spoke to George, who said we could come in two days later. I said that King’s was not as nice as UCLH and she said she was glad I was coming back to them and that they would look after me. The next two days were very hard and really dragged.

On Friday 6th January (18 weeks) we arrived at UCLH for our scan. George started scanning and we immediately saw the bigger baby, as was usual. He moved across to where the little baby  always was and I saw a sort of jumble at the bottom of the screen, not the baby we were used to seeing. I knew straight away. George stopped the scan and said he was so sorry. I started crying and looked at Tom and he had gone white. We had lost our ‘little’ baby. George said he would give us some time before he carried on looking at the other baby. I was desperate to know that he was okay so asked him to carry on. He did and I had tears streaming down my face the whole time. The other baby looked really well, which was something to hold onto, but we were devastated. I cried on the train home and spent the day just lying on the sofa, just trying to get my head round what had happened.  
 
We had an appointment to go back to UCLH two weeks later, with a scan at our local hospital in between. At the scan at our hospital, our remaining twin looked big and strong and she confirmed that he was definitely a boy! I clearly remember feeling what felt like happiness for the first time in a long time when she said he was okay.  It felt like an alien feeling.

I went back to work on January 23rd (20 3 weeks). We had a scan at UCLH the next day and our big baby looked
amazing…so much bigger and more developed than we had ever seen him and he had really long legs! We saw our little baby too and although it was sad, I felt glad to see him. George was very pleased with how our big baby was doing and said we could probably be referred back to our local hospital. I must have looked anxious about that because he then said we could have one more scan with him at UCLH. We booked that for Valentine’s Day and made a plan to have lunch first at a nice restaurant.

Over the next three weeks the baby was kicking and moving around a lot. He seemed to know when I felt sad about losing his brother because every time I did, he’d give me a big kick! Tom felt him kick four times and saw my tummy move when he kicked me. I had bad times where I would break down in tears about losing his little brother, but I
felt spurred on by needing to be strong for him.

Over the weekend of Friday 10th February, I noticed that he wasn’t kicking but I was still feeling him push out against my tummy. I googled ’23 weeks not kicking’ and was reassured by numerous pages saying that at 23 weeks, the baby can turn around and you won’t feel it kicking.

On Tuesday 14th February (23 4) I got the train into London to meet Tom for lunch. I wasn’t sure exactly where the restaurant was so I had my phone out and Google Maps up. As I was walking along, someone rode past on a bicycle and stole my phone out of my hand and rode off. I was so shocked and shouted after him that I was pregnant. I saw a payphone and called Tom, crying, to tell him what had happened. I found the restaurant and calmed down and spent a little while cancelling my phone and changing some passwords. I was really sad to have lost my phone but it felt like a small loss compared to losing a baby, as we already had. 

We got to UCLH and were taken straight in for our scan, chatting to George about what had happened to my phone.  I mentioned that I had felt the baby kicking less. He didn’t seem bothered and got ready to scan me. As soon as he put the scan on, I saw the same jumble of baby at the bottom of the screen and I knew he had died. George stopped scanning immediately and said ‘I’m so sorry’ over and over again. I was crying and he tried to sit me up but I couldn’t. The rest of that day is very hard to write about but suffice to say  it was mainly spent crying and wondering angrily why.

On Wednesday 15th February we went into our local hospital. I was given some tablets to get my body ready for labour. They  were very kind and explained everything that would happen and everything that they would do for us, including arranging the babies’ funeral if we wanted them to. It was a very hard day.

The next day was also very hard. We went shopping for blankets to wrap our babies in and it was heart breaking to be
around all the baby things. But we were pleased with our choice of blankets (one each to wrap them individually and then one bigger one to wrap them both in) and we also bought them two little bunnies. The lady in the shop asked if they were for twins, which broke my heart and I ended up telling her they were for our twins. She said she had also lost twins many years before.

On Friday 17th February, the day our babies should have  been 24 weeks, they were born asleep at 4.55pm and 5.10pm. Maximillian Thomas Bull (our ‘big’ baby) was born first and William Thomas Bull  (our ‘little’ baby) second.  Max weighed 1lb 4oz and William weighed just over 2oz. They both looked like their Daddy but had my fat toes. I can’t write about that day really, except to say that Tom was amazing and so was our midwife, Amy. But above all my babies were amazing and I can’t believe I grew them in my tummy. Saying hello and goodbye to my baby boys is the hardest thing I have ever had to do.

The boys were sent away to Birmingham for a post mortem and we had to wait three weeks before we could have their
funeral.

On Friday 9th March, the day Max and William should have  been 27 weeks, we buried them. Their funeral was terribly hard but it also felt really good to do something for them. We found out from the post mortem that Max had died due to lack of nutrition from the placenta, which was probably due to the laser surgery. But we had to have the laser surgery or we would probably have lost them both anyway.

The next months are hard to write about. I was devastated and I just wanted my babies back.  My arms physically
ached for them and I spent a lot of time at their grave, knowing they were there but unable to get them and hold them. I spent a lot of time with my mum and saw an excellent counsellor. I joined a TTTS grief support group
on facebook and ‘met’ some women who helped me beyond belief. I will never forget these amazing women who ‘got’ what I was feeling and helped me through the darkest of days. They will always be a part of my life and I hope to meet some of them one day, although most are in America.

Tom and I decided to try again for another baby quickly. We knew we could never replace our twins but we could
fulfil our wish to  be parents to babies on earth. We waited for me to have a period after they were born and then tried. I didn’t fall pregnant the first month, but miraculously I did the second month. Our little rainbow baby boy Rufus snuck in when we weren’t expecting it and I truly believe he was sent to us by someone, somewhere, maybe even  by Max and William. I was very, very anxious about losing Roo or about something else going wrong. I was looked after very well  by the NHS and had lots of extra scans and support. Luckily, I had a very textbook pregnancy and Roo arrived safe and sound. I am still very anxious about something happening to him, but maybe I would have been that way anyway. I don’t know. I miss the twins every day and sometimes the grief just hits me, fresh and raw again.  My arms still ache for them. My poor babies who never got a chance at life in this world.

Helen Twomey
UK



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