After two very long days of replying to text messages from well-wishing friends who had been excitedly asking us about the sex of our baby, Friday arrived. I have to admit that I googled the hell out of what could be wrong and I had uncharacteristically remained positive and convinced myself that there was nothing wrong with my baby and that it was something attached to my placenta.
At 6am, we travelled the 2 and a half hour journey up to Newcastle from West Cumbria and with bleary eyes made our way to the Fetal Medicine Unit. Shortly after our arrival we were directed into 1 of 6 'counselling rooms' where we sat for hours. The more we sat there the more we realised that this wasn't where women with normal babies came. This was for some of the most complex pregnancies in the region. A specialist midwife came to speak to us and advised us what would happen that day and then I was taken into a room where we were met by Professor Robson. He admitted that the referral sent by my local hospital was confusing and that he had no idea what he was about to find. He began the scan, he said very little during it. I took his quirky facial expressions as being positive and prayed that I was right.
We were seated back in the 'counselling room' and shortly afterwards, the Prof came in and joined us. He sat down and looked at us over his glasses and said the words that made our hearts shatter, "this baby has a major abnormality". I was in complete shock. I went numb and felt like a fly on the wall watching the horror unfold. He carried on talking but it was like I couldn't hear him properly, like there was a white noise or a fog that wouldn't allow what he was saying to get to me. He told us that he was 95% sure that our baby had a sacrococcygeal teratoma; a fast growing tumour attached to the sacrum. He said that my baby was 1 in 40,000 and that small hospitals like my local one would have never seen a case like this and probably never would ever again. Even a specialist centre like Newcastle only sees one every couple of years. The reason for his 5% doubt was because he had never seen a tumour as vast as this at this gestation (21 weeks). The bad news continued to flood in, we were told that she had a very poor prognosis and that continuing with the pregnancy would put me at too much risk. We were told that she would probably develop hydrops fetalis (fluid around the organs which results in heart failure) and die in utero. He said I could possibly get Mirror Syndrome which basically is a mimic response where my body develops heart failure too. He went onto say that if I did get to a point of delivery which could have been anytime after 32 weeks then I would have to have a classic c-section which involves a horizontal and vertical incision of the uterus therefore putting future pregnancies at risk too. He added that having this c-section was a major risk which could result in me and the baby haemorrhaging severely due to the size of the tumour. And even once she was over all of these hurdles, she would have to endure hours and hours of extensive surgery to remove the tumour and still might not pull through. Our would had come crumbling down.
He then gave us 2 options: to terminate the pregnancy or to have an MRI scan to confirm the diagnosis followed by a consultation with a paediatric surgeon. We chose the latter. The Prof pulled some strings and I had my MRI scan later that day but had to wait another long week for the results.
We travelled home and began a week of what felt like mourning. We were grieving for a baby that was still alive. The more we talked about it the more it came apparent that Ian was not willing for my life to be put at risk and we felt we had no other option but to terminate. So we lived a week of thinking we were going to have to end the life of our precious, much wanted baby.
At 6am, we travelled the 2 and a half hour journey up to Newcastle from West Cumbria and with bleary eyes made our way to the Fetal Medicine Unit. Shortly after our arrival we were directed into 1 of 6 'counselling rooms' where we sat for hours. The more we sat there the more we realised that this wasn't where women with normal babies came. This was for some of the most complex pregnancies in the region. A specialist midwife came to speak to us and advised us what would happen that day and then I was taken into a room where we were met by Professor Robson. He admitted that the referral sent by my local hospital was confusing and that he had no idea what he was about to find. He began the scan, he said very little during it. I took his quirky facial expressions as being positive and prayed that I was right.
We were seated back in the 'counselling room' and shortly afterwards, the Prof came in and joined us. He sat down and looked at us over his glasses and said the words that made our hearts shatter, "this baby has a major abnormality". I was in complete shock. I went numb and felt like a fly on the wall watching the horror unfold. He carried on talking but it was like I couldn't hear him properly, like there was a white noise or a fog that wouldn't allow what he was saying to get to me. He told us that he was 95% sure that our baby had a sacrococcygeal teratoma; a fast growing tumour attached to the sacrum. He said that my baby was 1 in 40,000 and that small hospitals like my local one would have never seen a case like this and probably never would ever again. Even a specialist centre like Newcastle only sees one every couple of years. The reason for his 5% doubt was because he had never seen a tumour as vast as this at this gestation (21 weeks). The bad news continued to flood in, we were told that she had a very poor prognosis and that continuing with the pregnancy would put me at too much risk. We were told that she would probably develop hydrops fetalis (fluid around the organs which results in heart failure) and die in utero. He said I could possibly get Mirror Syndrome which basically is a mimic response where my body develops heart failure too. He went onto say that if I did get to a point of delivery which could have been anytime after 32 weeks then I would have to have a classic c-section which involves a horizontal and vertical incision of the uterus therefore putting future pregnancies at risk too. He added that having this c-section was a major risk which could result in me and the baby haemorrhaging severely due to the size of the tumour. And even once she was over all of these hurdles, she would have to endure hours and hours of extensive surgery to remove the tumour and still might not pull through. Our would had come crumbling down.
He then gave us 2 options: to terminate the pregnancy or to have an MRI scan to confirm the diagnosis followed by a consultation with a paediatric surgeon. We chose the latter. The Prof pulled some strings and I had my MRI scan later that day but had to wait another long week for the results.
We travelled home and began a week of what felt like mourning. We were grieving for a baby that was still alive. The more we talked about it the more it came apparent that Ian was not willing for my life to be put at risk and we felt we had no other option but to terminate. So we lived a week of thinking we were going to have to end the life of our precious, much wanted baby.
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