Friday 20th September 2013
We went to the RVI this day to see a consultant in the foetal medicine department. I actually felt quite calm and extremely hopeful. I was still in the mind-set that everything would be ok, it had to be! After talking to the midwife, we were shown to a scanning room. The scan was a lot more in depth than previously, all I can remember is the sonographer saying measurements and "normal" after each measurement....apart from the femur, humerus and thorax. A second consultant came to look at the scan and we were escorted into a private room.
I've been thinking about how I want to write this post, reiterating the information given to us that day, but also the emotions I went through that day and the days following. It's been 6 weeks and 3 days since this awful day and although I know the emotions I felt, I feel they have been lost a little as everything was such a daze....like a nightmare. I think the best way to explain is to copy over my posts from Baby and Bump that were written at the time as I was experiencing it.....
"Hi All. Well today has to be one of the toughest I've ever had to deal with.
We don't have good news I'm afraid. Our baby boy has a very rare genetics problem. Osteogenesis imperfecta. His tiny arms and legs are fractured in many places and his rib cage is not forming correctly. We have to see a further geneticist on Monday for further discussion, but likely hood is he would be still born or not live very long, we were told days due to him being unable to breathe on his own.
Im crushed."
"Thank you all. I'm a mess. Really don't know what to do with myself. We are lucky to have great support from family and friends. Life is so cruel. I just want everything to be ok again. Just 4 days ago we were planning our wedding and new baby and now I feel like my world has been crushed. That's my little baby boy in there and I'm helpless to do anything. The only saving grace I have right mow is he can't feel a thing. So incredibly heartbroken."
"I'm just so lost right now. So, so tired and emotionally drained.
For those of you who have seen my previous threads you will be aware that we are getting married in 3 weeks after bringing our wedding forward due to my dad being diagnosed with terminal cancer. My baby has been a huge lifeline for me at this difficult time, I often listen to the heartbeat as a source of comfort.... This diagnosis is so cruel for anyone, but I feel like my baby is being cruelly snatched away from me at an already unbearable time. I really don't know how to cope.
Your kind words really do help."
"We've had 2 opinions so far. They originally had thought achondraplasia (dwarfism). On specialist looking they've said oi type 2 which is a lethal form. We have to go back Monday to see a geneticist who will look further...but his poor little bones are so broken they are curled in and his ribs are not growing correctly (bell shaped) and too small so it is likely once being delivered he won't breathe on his own or will pass shortly after...normally.hours. And we have to consider the pain he would have too.
The diagnosis is pretty certain. With him being so young in utero with so many breaks already when he's protected by everything it looks pretty much likely type 2. But just to be even crueller they would never know until delivery so we have a choice to continue knowing the likelihood and seeing him suffer or terminate sooner than later. How am I meant to make this decision? His organs are all normal, although lungs will probably not develop, his skull, face and spine are normal...we even saw a little yawn the other day. I have bonded with him, and love him so much."
"I really don't think I could put myself through another 20 week's knowing that at the end we will lose him anyway. Yes they would give him pain relief, but how much pain relief can they give such a small baby to make it work? From someone who sees her dad take morphine and other pain killers daily to not much avail, how much pain could a baby take when he would have so many fractures and struggle to breathe on his own? I could not put my son through that. Right now, he can't feel a thing, he is unaware of any fractures."
"Unless they tell me a miracle tomorrow which I cling to every minute, I really don't know. I'm not having a go, I know people offer their words out of kindness and support, but I really can't imagine the pain it would cause my little boy and to us seeing him suffer in such a way.
I'm not entirely sure of what everything entails just yet, we can make a more informed decision tomorrow. In the mean time I again thank you all for your support, wishes and prayers. It means a huge amount knowing you are all with us in thought. "
"I'm sorry to post and that it may upset some....please don't read if you upset easily. This is the only place I have written down my emotions at the time of than happening and want to be able to come back and go over these at a later date.
I've just woke up 5:30am from a nightmare. They took my baby (a girl in my dream for some reason) after I'd decided to end the pregnancy and told me actually she would have been fine. This has once again crushed me. I know dreams are dreams and they play on what's going on in your life, but I feel like it's set me back.
I broke the news to my mam yesterday as she's been on holiday and of course didn't want to tell her something like this over the phone when she was in a different country. She is of course heartbroken, but as supportive as ever. It helps to see how strong my mam has to he for me, and I have to be the same for my baby. I felt completely devoid of emotion yesterday. Not particularly sad, but just nothing...my brains coping mechanism kicking in I think.
My partner (Paul) saw some of his family and friends too yesterday, he went alone and I think this was good for him. I also let him read through this thread to show him the support being offered and I think he was quite overwhelmed.
Today is going to be difficult. I can't even imagine. But we're strong, we will eventually get through this as difficult as it will always be.
We both send our thank yous for your continued support."
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