The wait for the results was awful. I couldn't think about anything else and Lee and I couldn't talk about anything else, again going through every concievable scenario. We did our best to carry on as normally as possible for Phoebe's sake. Every time the phone rang, my stomach turned over.
And then the call came. Thankfully Lee was home. A nice lady spoke on the other end of the phone but I sensed in her voice that it wasn't good news and she confirmed it as soon as she spoke. "It's not good news I'm afraid - we have the results of the amnio and your baby has Patau Syndrome". Patau Syndrome? What was that? I'd never heard of it. She spelt it out for me but I was still non the wiser. She explained that it was a duplication of chromosone 13. What did it mean? How was this going to affect our baby? Then she uttered those life changing words....."Unfortunately, it isn't compatible with life". Silence.
Our baby was going to die.
Saturday, 8 January 2011
Our Worst Fears and More
The journey to the hospital was horrible. I had butterflies in my tummy the whole way, I think we must have talked through every possible scenario but decided that there was no point until we knew what we were dealing with. When we arrived, I felt sick and gripped Lee's hand tightly as we walked into the waiting area. I couldn't help but look around at the other women and wonder what was the matter with their babies., wondering if their problems were as bad as I feared ours to be.
The specialist scanned me for 40 minutes - maybe more. She had another Doctor with her - I think he was training as she seemed to know more than he did and was leading the scan. I remember the look of absolute worry on Lee's face. He looked sick. I felt it. As I lay there, I just kept hoping they'd made a mistake at Leighton. More than anything, I wanted her to turn to us and say that she didn't understand why we were sent and that everything was fine with the baby, but of course she didn't. She talked all kinds of medical jargon to her colleague for the whole 40 minutes, non of which I understood but it didn't sound good. On the other hand, it didn't sound bad either, I guess when you do a job like they do, you just state the facts, no emotion attached. After she completed the scan, she confirmed our worst fears and more...
The Doctor sat us down and talked us through what she had found. It was worse than we could ever have imagined. Our baby had a complex heart abnormality, a bi-lateral (both sides) cleft lip and palate, part of his brain was smaller than it should have been and he had a sublte hand abnormality. She spent ages explaining the heart complications. In a nutshell, our babie's tubes and valves were all plumbed wrong. She told us that if the abnormalites weren't linked to a syndrome, then in an attempt to correct the problems, the baby would have to have open heart surgery as soon as it was born, with only a 50% chance of survival. That would then be followed by another open heart operation within about a month, still with only a 50% chance of survial. Following that, the baby would have to have another operation at the age of 1 with about a 70% chance of survival. If the baby survived these operations, his life expectancy wouldn't be great. In addition, he would have to have an operation to correct his cleft lip and palate - trivial by comparison really. With all these serious complications, the Doctor was doubtful that the baby would even go full term and if it did manage to go full term, that it would probably underweight. However, the further we got into the pregnancy, the chances of us losing the baby got smaller.
The Doctor explained that all these complications were associated with a syndrome. She didn't know which one, but the only way to find out was to have an amnio. I wasn't keen on the prospect but she explained that the risk to the baby was relatively small and that it would give us the knowlege we needed to understand exactly what we were dealing with. It would help us to be prepared if and when the baby was born. If we chose to terminate the pregnancy, then time was of the essence. She advised that we have the test there and then. Lee and I discussed what we were going to do and decided that we would be far better knowing exactly what the problem was and to try to come to terms with it, than to spend the next 4 months worrying about it may or may not be, so we went ahead with the test.
The journey home was miserable and very teary. We just didn't understand why this was happening to us, but why not us I guess? We went through every possible scenario. If the baby didn't have a syndrome and went full term, was it fair to put him through those awful operations, how would it affect Phoebe if one of us had to permanently live at Alder Hay for the best part of a year? What quality of life would the baby have? Could we ever consider a termination? We asked ourslves 101 questions, none of which could be answered until we had the results of the amnio. We just had to wait......
The specialist scanned me for 40 minutes - maybe more. She had another Doctor with her - I think he was training as she seemed to know more than he did and was leading the scan. I remember the look of absolute worry on Lee's face. He looked sick. I felt it. As I lay there, I just kept hoping they'd made a mistake at Leighton. More than anything, I wanted her to turn to us and say that she didn't understand why we were sent and that everything was fine with the baby, but of course she didn't. She talked all kinds of medical jargon to her colleague for the whole 40 minutes, non of which I understood but it didn't sound good. On the other hand, it didn't sound bad either, I guess when you do a job like they do, you just state the facts, no emotion attached. After she completed the scan, she confirmed our worst fears and more...
The Doctor sat us down and talked us through what she had found. It was worse than we could ever have imagined. Our baby had a complex heart abnormality, a bi-lateral (both sides) cleft lip and palate, part of his brain was smaller than it should have been and he had a sublte hand abnormality. She spent ages explaining the heart complications. In a nutshell, our babie's tubes and valves were all plumbed wrong. She told us that if the abnormalites weren't linked to a syndrome, then in an attempt to correct the problems, the baby would have to have open heart surgery as soon as it was born, with only a 50% chance of survival. That would then be followed by another open heart operation within about a month, still with only a 50% chance of survial. Following that, the baby would have to have another operation at the age of 1 with about a 70% chance of survival. If the baby survived these operations, his life expectancy wouldn't be great. In addition, he would have to have an operation to correct his cleft lip and palate - trivial by comparison really. With all these serious complications, the Doctor was doubtful that the baby would even go full term and if it did manage to go full term, that it would probably underweight. However, the further we got into the pregnancy, the chances of us losing the baby got smaller.
The Doctor explained that all these complications were associated with a syndrome. She didn't know which one, but the only way to find out was to have an amnio. I wasn't keen on the prospect but she explained that the risk to the baby was relatively small and that it would give us the knowlege we needed to understand exactly what we were dealing with. It would help us to be prepared if and when the baby was born. If we chose to terminate the pregnancy, then time was of the essence. She advised that we have the test there and then. Lee and I discussed what we were going to do and decided that we would be far better knowing exactly what the problem was and to try to come to terms with it, than to spend the next 4 months worrying about it may or may not be, so we went ahead with the test.
The journey home was miserable and very teary. We just didn't understand why this was happening to us, but why not us I guess? We went through every possible scenario. If the baby didn't have a syndrome and went full term, was it fair to put him through those awful operations, how would it affect Phoebe if one of us had to permanently live at Alder Hay for the best part of a year? What quality of life would the baby have? Could we ever consider a termination? We asked ourslves 101 questions, none of which could be answered until we had the results of the amnio. We just had to wait......
Friday, 7 January 2011
The Day our World Fell Apart
I remember telling a friend who was also pregnant and due about a month earlier than me that I had to go back for another scan. We joked that I just needed to have a can of coke to wake the baby up and make sure he or she behaved for the Sonographer. If only it had been so simple...
The date of the re-scan came around and we went along, fearing nothing, just expecting a routine scan and for the Sonographer to tell us that she'd now got a clear view of the heart and that everything was fine. She didn't. She spent what seemed like ages looking around again but didn't give us any feedback. I sensed a problem. She left the room and came back with another Sonographer. They discussed what they were seeing on the screen and agreed that something wasn't right. We were asked to return to the hospital that afternoon for a scan with a consultant. The fear set in at that point. What was wrong? What were they going to find? We returned to the hospital that afternoon and the Consultant re-scanned me. She was quite a serious Doctor and didn't put us at ease but then, there was nothing to put us at ease about. Our nightmare had begun. After what seemed like an eternity of racing hearts and sweaty palms, she moved round the bed to tell us the news. Our baby had got problems with it's heart, a cleft lip and a problem with it's hand. She explained that all of these things are associated with Downs Syndrome. At that point, I broke down. I cannot put into words the utter devestation I felt, our world fell apart. Everybody wants a perfect baby. The irony is, I now wish it had been Downs Syndrome - Benjamin would still have been with us if it was.
They took us to a room where a specialist Midwife talked us through things. She was lovely, she gave us a big box of tissues and comforted us as much as she could. Lee and I just held each other and sobbed. We couldn't believe this was happening to us. We were just speechless. We asked ourselves the same question that probably every parent asks themselves in these situations - why us? what have we done to deserve this? She told us we would have to go to Liverpool Women's Hospital for a further Scan. They had heart specialists there and they needed to take a closer look to be more accurate about what the problems were.
When friends called to ask how the scan had gone, I tried to speak but couldn't. I only managed about two words before I broke down. Lee had to take over and only managed to do it through sobs himself. I remember coming home from the hospital and standing in the hall with my Mum, Dad and Lee and us all just sobbing as we hugged each other. Then Phoebe came running in from the lounge and we had to wipe away the tears and be as normal as we could for her. We had told Phoebe about the baby in Mummy's tummy but after that day, we didn't talk about it again - at least not as an exiciting event that was about to happen. At nearly 2, she didn't need to know and was far too young to understand anyway.
The hospital got us in pretty quickly but the wait was torture. I couldn't think of anything else in the days leading up to the appointment. Maybe they'd got it wrong - you hear stories that Doctors make mistakes - I clung onto the hope that they had but I knew in my heart.... there was no mistake.
The date of the re-scan came around and we went along, fearing nothing, just expecting a routine scan and for the Sonographer to tell us that she'd now got a clear view of the heart and that everything was fine. She didn't. She spent what seemed like ages looking around again but didn't give us any feedback. I sensed a problem. She left the room and came back with another Sonographer. They discussed what they were seeing on the screen and agreed that something wasn't right. We were asked to return to the hospital that afternoon for a scan with a consultant. The fear set in at that point. What was wrong? What were they going to find? We returned to the hospital that afternoon and the Consultant re-scanned me. She was quite a serious Doctor and didn't put us at ease but then, there was nothing to put us at ease about. Our nightmare had begun. After what seemed like an eternity of racing hearts and sweaty palms, she moved round the bed to tell us the news. Our baby had got problems with it's heart, a cleft lip and a problem with it's hand. She explained that all of these things are associated with Downs Syndrome. At that point, I broke down. I cannot put into words the utter devestation I felt, our world fell apart. Everybody wants a perfect baby. The irony is, I now wish it had been Downs Syndrome - Benjamin would still have been with us if it was.
They took us to a room where a specialist Midwife talked us through things. She was lovely, she gave us a big box of tissues and comforted us as much as she could. Lee and I just held each other and sobbed. We couldn't believe this was happening to us. We were just speechless. We asked ourselves the same question that probably every parent asks themselves in these situations - why us? what have we done to deserve this? She told us we would have to go to Liverpool Women's Hospital for a further Scan. They had heart specialists there and they needed to take a closer look to be more accurate about what the problems were.
When friends called to ask how the scan had gone, I tried to speak but couldn't. I only managed about two words before I broke down. Lee had to take over and only managed to do it through sobs himself. I remember coming home from the hospital and standing in the hall with my Mum, Dad and Lee and us all just sobbing as we hugged each other. Then Phoebe came running in from the lounge and we had to wipe away the tears and be as normal as we could for her. We had told Phoebe about the baby in Mummy's tummy but after that day, we didn't talk about it again - at least not as an exiciting event that was about to happen. At nearly 2, she didn't need to know and was far too young to understand anyway.
The hospital got us in pretty quickly but the wait was torture. I couldn't think of anything else in the days leading up to the appointment. Maybe they'd got it wrong - you hear stories that Doctors make mistakes - I clung onto the hope that they had but I knew in my heart.... there was no mistake.
Tuesday, 4 January 2011
First Sign of a Problem
The early stages of my pregnancy felt no different to my first child, Phoebe. I took it for granted that everything would be ok with the baby - I think maybe you do when you've had one normal pregnancy and a healthy baby - well I did anyway. It's strange though, very early in the pregnancy, I had a feeling something wasn't right. There were no physical signs that gave me any reason to think this but it was just a gut instinct, or maternal instinct I guess. I didn't tell anyone what I'd felt, not even Lee - I just dismissed it as me being silly and imagining things, little did I know! I went for my 12 week scan in early January and everything looked fine. The baby's heart was beating and I felt an overwhelming sense of amazement and love for this little being that already had a beating heart at just 12 weeks. There's very little they can see at 12 weeks, it's really just a dating scan, so we came away happy and I had no reason to be concerned about anything.
I was really excited about the 20 week scan. You get to have a proper look at the baby and it's little fingers, toes, face and so on. It's just an amazing thing to experience and sometimes hard to believe the miracle that is happening inside you.
The Sonographer had a good look round and ticked all the relevant boxes that she needed to. She seemed to take quite a while around the heart but I thought nothing of it really, although I did wonder why it was taking her so long. At the end of the scan, she told us that she wasn't able to see all 4 chambers of the baby's heart. She put this down to the baby lying funny and just not getting a clear view. She asked us to come back in a week so that she could tick the final box on her list .....
I was really excited about the 20 week scan. You get to have a proper look at the baby and it's little fingers, toes, face and so on. It's just an amazing thing to experience and sometimes hard to believe the miracle that is happening inside you.
The Sonographer had a good look round and ticked all the relevant boxes that she needed to. She seemed to take quite a while around the heart but I thought nothing of it really, although I did wonder why it was taking her so long. At the end of the scan, she told us that she wasn't able to see all 4 chambers of the baby's heart. She put this down to the baby lying funny and just not getting a clear view. She asked us to come back in a week so that she could tick the final box on her list .....
Exciting News
I discovered I was pregnant with my second baby in October 2008. Lee and I were thrilled and at six weeks, told all our family and close friends. Everyone was chuffed to bits for us. Our daughter, Phoebe was 17 months when we found out I was pregnant, so that meant there would be just over a 2 year gap when the baby arrived in July. We were fortunate that we got pregnant almost immediately, so this was exactly what we'd hoped for when we'd been "family planning" so to speak! I had a smooth and relatively easy pregnancy with Phoebe (apart from being induced-nasty!). There were no complications or problems, just heartburn and swollen ankles towards the end. In my ignorance, I expected my second pregnancy to be the same and to a degree, it was.........
Monday, 3 January 2011
My Inspiration
Sharing my story on a blog is not something that I ever considered until I recently met a beautiful baby girl who tragically isn't expected to reach her first birthday. Little Miss Ellie and her parents really touched me and after meeting them, I realized that I needed to share my story in the hope that I may help, comfort or maybe even inspire someone to perhaps take a different course of action in their life and the life of their unborn baby.
I lost my beautiful baby boy, Benjamin almost 18 months ago. I would like to dedicate this blog not only to my beautiful Benjamin but to all the other little angels who have been taken from this life so prematurely and to all the wonderful parents that are an inspiration to me and so many others in times of such adversity, who continue to smile and campaign for their cause despite the pain they are suffering.
To gorgeous Miss Ellie and her parents who inspired me so much when I met them today and to beautiful little Charlie Benjamin Mann and his parents who also inspired me when I read about them in my local paper, all of whom are so brave and strong.
My story follows....
I lost my beautiful baby boy, Benjamin almost 18 months ago. I would like to dedicate this blog not only to my beautiful Benjamin but to all the other little angels who have been taken from this life so prematurely and to all the wonderful parents that are an inspiration to me and so many others in times of such adversity, who continue to smile and campaign for their cause despite the pain they are suffering.
To gorgeous Miss Ellie and her parents who inspired me so much when I met them today and to beautiful little Charlie Benjamin Mann and his parents who also inspired me when I read about them in my local paper, all of whom are so brave and strong.
My story follows....
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