(This is a guest blog by Karen about her sons,Odhran and Daire. Thank you for sharing this with us, Karen.)
Twin-to-twin Transfusion Syndrome took the lives of our beautiful baby sons who were stillborn on 2nd March 2007.
My husband Gavin and I were so overjoyed when we found out we were pregnant and my son James cried with happiness at the thought of becoming a big brother. Both families were so delighted for us. The pregnancy was a nightmare right from the start – at 7 weeks I started bleeding heavily and I was told that perhaps I’d lost a twin as they could see a second sac but it was empty, the hospital then scanned me at 9 weeks and said that there was only one baby there.
We had our booking in appointment at 12 weeks and the midwife confirmed that we were having twins and she seen two babies!! Gavin and I couldn’t believe it were were shocked but so, so excited at having two little babies. James went from being happy to soooo happy and was jumping around like mad when he found out that he was having not one new brother or sister but two!
I went back to the hospital at 15 weeks and got to see a consultant who confirmed the twin pregnancy and even said that he’d seen a dividing membrane – we asked him to confirm if they were identical or non as we wanted to rule out any complications in identical twins as my nieces were identical and died shortly after being born – he said he was 100% sure they were non-identical…Gavin and I were relieved all but for a short while…
As the weeks went on I got more and more uncomfortable and I was diagnosed with SPD and was put on a support belt and crutches. My bump was getting so big and uncomfortable – I couldn’t even walk at times the pain was so bad. I rang the local maternity unit several times and explained to them how I was feeling and that I was pregnant with non-identical twins – each time I was told that the unit was very busy and I’d have a wait of about 4-6 hours to be seen they said the best thing to do if I wasn’t staining or wasn’t getting any contractions to take 2 paracetamol and go to bed! 7 weeks passed and at my 22 week antenatal, the doctor asked me if I was sure my dates were right as I was so big. I couldn’t even lie back on the bed to be scan and I had to be scanned sitting up.
After the scan he admitted me to the ward as he said that there was too much fluid round one of my twins. The next morning my own consultant (who I’d never met before then) took my hand and told me that my babies were very ill. My head swam – what was she talking about – i’d just seen them on a scan the day before and they were moving away. To me, their mummy, they looked perfect.
I was taken down for another scan and before we know it we were told about Twin To Twin Transfusion Syndrome (I’d never in my life heard of it) and that we would have to be transferred to another hospital. Being from Belfast we thought that that would be another local hospital or somewhere in the Republic of Ireland – they said that the operation could only be performed in St Georges in London.
We finally arrived at St Georges at approx 10.30pm on Sunday evening and had to find the patient accommodation. I waited outside the patient accommodation while Gavin tried to find someone to help us. By this time so late in the evening it was dark, I was tired, sore, frightened, anxious, crying lots and needed help…
After a restless sleep, after about half an hour of the receptionist not knowing who we were we finally seen one of the consultants. She scanned me and asked if we knew what sex our boys were, we told her we didn’t want to know as we were told they were non-identical and would be happy either way, she told us that she would have to tell us and after a scan she confirmed that yes I had twin-twin and we were having identical twin boys…and that our smaller twin was very ill.
Monday evening we were introduced to Dr B. who was to perform the surgery. I was wheeled into an operation theatre and given a “happy drug” which made me feel almost in a dream state. Whilst the operation was going in Gavin and I could see our babies on a tv screen right in front of our faces. Our sons, our babies, our world – right in front of us. Seeing little bits of their bodies, faces, hands, feet as the light from the camera searched for the right place to go – what a total surreal experience which was something that I will never erase from my mind. The surgery was performed and 3 litres of fluid drained away from me. We were told to come back Tuesday morning for a scan to see how the boys did.
During the time from the surgery until the next morning was so long. Gavin slept on a flat mattress on the bed next to me. We would have had to go back to patient accommodation if it wasn’t for Sandra the midwife who was looking after me insisted that I get a bed in the hospital. Thankfully she got me a private room, had she not I would have been on the ward with mothers and newborns.
Tuesday morning I couldn’t watch as Dr B. scanned me and I watched Gavin’s face crumble and he broke down crying as our fears became a reality – our smaller twin son didn’t survive… our other son needed a blood transfusion as he was anemic. Tuesday evening once again I lay on the bed while Dr B. performed the transfusion – after the second attempt Dr B. was pleased with the result and said that the transfusion was a success.
Gavin and I asked what happened next and we were told that their job was done and we could book our flights and go home, we were told that I should feel lots of movements now and that our surviving twin was going to be okay… We could only get a flight home on Wednesday. Again, we had the most horrific time travelling, I was in pain, I was nervous that my waters would break and mostly I was aware that one of my baby sons had died and the other was fighting for his life. Gavin and I wanted our family, we were emotion and frightened. As much as Gavin loves me and his sons and however much he protected us during the time in London he really didn’t deserve to carry the responsibility had anything happen to me during the travelling to and from London. We arrived home tired late Wed evening.
It was so good just to be home – however when I woke early on Thursday morning I turned to Gavin who was already awake, he was looking at my belly, I said to him that I knew that our surviving twin had died. He looked at me and knew not to question me – I told him I felt empty, that I felt lifeless that I knew our other son was gone – a mother just knows. After calling out our GP we were sent back to the hospital for confirmation it was confirmed what I already knew, our second baby boy had died.
I asked if I was to have a c-section – she said that I would have to be induced and give birth naturally. I screamed to her that I couldn’t do it, that to me labour was a special happy thrilling time. I just could not do it. We were then sent home so that evening we could plan with our family our babies funeral. We spent the evening with James and our parents. On Friday – 2nd March I woke up and took my time getting ready. My dad called to take us to the hospital to have my babies. I was so calm, I didn’t want to go back to hospital, as far as I was concerned my babies were where they were supposed to be, they were sleeping together in my womb, were they had been for the past 23 weeks.
At the hospital we were taken up to the labour ward and into a room where I later found out all the angels are born.
Our sons were born at 17.38 and 17.40 I had no idea what time of day it was or even if it was still morning or afternoon but in a weird way I knew the time – before I seen our sons for the first time I turned to the midwife and said to her ‘it’s 20 to 6 isn’t it’ my son James was born @ 17.39 – so his brothers were born either side of his birth time. I felt that he was in the room with them. Gavin and my mum were their when they came into the world. Gavin’s first borns, his sons, his babies, his reason for being. Gavin is James step father…
The midwife dressed the boys and handed them to me. I first thought that I would be frightened of them but when I seen our sons and held our sons in my arms I felt such a rush of love swell over me, words can’t explain how I felt; proud, overwhelmed, distraught, deflated, heartbroken, in love. I have never in my life seen such beautiful, perfect babies as our sons. Our smaller son, who was born first, we named Odhrán Kevin (pronounced Or-ran) and our bigger son we named Dairé John (pronounced Darrah). Odhrán looked so much like his big brother does when he is sleeping and Dairé looked so much Gavin! Perfection, beauty, pure, together…
The hardest thing was telling James that he wouldn’t be a big brother, he has a little understanding of death as my big brother Kevin died the year before from diabetes at just 34…
On Monday 5th of March we buried our beautiful sons with my grandparents, They were wrapped in James’ christening shawl. It was important to me that they were laid to rest with James’ shawl so that they always have their big brother close to them protecting them.
A few close friends and our immediate family stood at the graveside as Gavin carried his sons in a little white coffin and placed them with the care of my family in heaven.
That was the day my heart broke into pieces….
I don’t think I will ever ever be at peace… I’m consumed with guilt – why did I no just go to the hospital instead of ringing them, why did I not recognise the signs, why did I not get a second opinion when the boys were diagnosed as non-identical? So many questions that will never be answered, the only one Gavin and I can answer is that we know that Dairé didn’t want Odhrán being on his own and that’s why he went with him. We took one photograph of our sons and we have their tiny feet and handprints and a little blanket that covered them in the moses basket… I treasure it with all my heart. It’s all I have of them.
Our sons are loved beyond anything else in this world. They have very proud grandparents, aunts, uncles and cousins who were so excited about having two new babies in the family.
I spent 6 months in bed and not socialising with friends. The smallest word but the biggest question… WHY…
We now have a beautiful daughter called Grace who is 3, she is smart, beautiful, intelligent, fun, full of life and a non stop typial girl a chatter box. it wasn’t until Grace was placed in my arms and i heard her cry did part of my heart finally heal. My heart will always be broken – nothing can ever replace the devastating trauma of having two babies and not seeing them open their eyes, hear their cry, see their “firsts”…but yes life must go on and we learn to live a new “new”…
