I spent a lot of time searching for somebody with the exact same experience as us whilst we were going through a horrendous year - but I couldn't. By sharing our story I hope it reaches somebody that needs to read it.
We tried for a baby as soon as we got married. I got pregnant soon after but miscarried at an early stage. Another few years passed and nothing happened. We decided to try IVF treatment which, to our delight, worked the first time! We only had one embryo good enough to implant, so to say we were shocked when we found out it had split and we were having identical twins is a massive understatement.
We were told we were having monochorionic monoamniotic (MoMo) twins which meant they were sharing the placenta and amniotic sac. It was a very high risk pregnancy and the biggest risk was cord entanglement due to there being no membrane between the twins. I did some research and the odds of it happening were 50/50. I was scared and completely convinced it would happen to us. But when we went for a scan at 13 weeks we were told they were not sharing an amniotic sac – what a relief!
At 17 weeks we had our first consultant’s appointment. The scan took forever, and eventually I was told I had twin to twin transfusion syndrome (TTTS). I was in shock. I just wanted to run out of the room. I started crying as he told me there was a high chance that I would only have one of my babies. He referred me to Birmingham for laser ablation surgery as it is not offered in Wales.
The first time we went to Birmingham Women's hospital we were told it wasn't quite at the stage that qualified for the surgery. A week later, at almost 19 weeks pregnant, we returned and I had the surgery. An hour later I was scanned and two heartbeats were seen. We were so happy, but I knew the first week was the most crucial.
The next day I was booked in with my consultant for a reassurance scan. He took a long time and I knew something wasn't right. He told me my smaller twin had not made it and my bigger twin was showing signs of heart failure. I was distraught and in agony. Breaking the news to my husband broke my heart all over again.
I had to continue to carry both babies as I couldn't risk anything happening to our surviving twin. We found out we were having boys. It turned out our survivor was not suffering heart failure and continued to grow normally. An echogenic and distended bowel was shown on my scans but it was believed this was blood the baby had swallowed from the laser surgery.
Then at 24 weeks I started to get brown discharge. I was told it was probably the blood from the surgery passing. But two weeks later I had gushes of fluid mixed with the brown blood. I was diagnosed with spontaneous rupture of membranes (SROM) and admitted to hospital. A neonatal doctor came to tell us what would happen if I went into labour. At that point, I wasn’t showing signs of infection so I was discharged after the weekend.
Later that week we went back to the hospital and I was put on the monitor to listen to the baby's heartbeat. As I got up I felt the fluid rush from me again but this time it was bright red. They rushed me to delivery and got me ready for theatre. Luckily after nine hours my bleeding slowed down enough that I could be transferred to a different hospital. However my placenta had started to slowly come away and I had a clot close to the opening of my cervix. It seemed like everything that could go wrong did.
At 28+5 weeks I gave birth to our baby boys. Noah was born at 3.51am, weighing 2lb 4oz, and his brother Isaac was born 5 minutes later, weighing just 30g. Noah was taken to intensive care and Isaac was taken to the morgue. My husband and I grieved for both my boys. The pain I felt was both emotional and physical. I wouldn’t be able to cope if I lost Noah too. I was broken and I couldn't see a time when it would get better.
Eight hours later we went to see Noah. I will never forget the first time I was wheeled into that unit. The noises will always be with me. My baby boy looked like a plastic doll. I tried not to love him because I had convinced myself that, if I didn't love him and he died, I would be able to deal with it better. But it was impossible not to fall in love with him.
I couldn't bear the thought of losing him as well as his brother! The fear was indescribable. I would break down almost every day next to his incubator. I could not let myself imagine him coming home. I found it difficult when people brought gifts because I didn't know what I would do with them if he didn't make it.
After ten weeks of extreme ups and downs - three blood transfusions, three treatments for sepsis and so many backward steps - Noah came home on oxygen in time for Christmas. He is amazing! I look at him every day and burst with pride. All the staff involved in my care during the pregnancy and Noah's care were amazing. We cannot thank them enough! How do you thank people that saved your littles boy’s life? There are no words for that.
We held a funeral service for Isaac. He had to be recognised - maybe not legally but he is just as much our little boy as Noah is. They were identical and I'm wracked with guilt every day that Noah doesn't have his brother. I feel as though my body couldn't give him what he needed. I also feel angry that I couldn't have both my babies. Why us? But I'm trying to accept there wasn't anything else that could have been done.
I don't know if I ever will accept it but hopefully as time goes on it will get less painful. My husband got me through this experience. He had enough strength for the both of us and without him I would have cracked. He made me look at all the positives and appreciate the little milestones Noah reached.
I hope this story helps somebody and gives them some kind of comfort in their difficult time.
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