Hi! You know me as Clarky. I remember sitting a tthe computer bawling, not knowing how to get started. It was all I could come up with!!!
I have been married to Tim for 22 years - yeah, got married at 19 - Wow! He makes me laugh like no other person. He has shared all the good tiems in my life and our worst - you all know our worst, but this is my story - as much as I can share (some things I still keep to me - it hurts too much to share). My story is long because by 6 weeks I knew something was not right. I was having labour bum ache, only experienced when giving birth to my other children, and severe cramps. I thought he was going, no blood though, but I knew something was not right. By 10 weeks I looked around 4 months, by 12 weeks I felt at term. We had been back in the UK as Tim's father was ill, and died, and saw the dr's there. They said, "it's your age, you have had lots of children." By 12 weeks, due to two scans they changed my dates twice. I knew they were wrong and I argued with them. "You don't know when you conceived," they said!!!!
We had a scan that we begged for at 15 weeks, as coming home. "Perfect baby," they said. I have never in my life seen such clear pictures. Thsi big back of water made him stand out; crossed ankles and all, perfect pregnancy. My friend in the UK asked how I felt going back to Canada after being in the UK so long and I said I was looking forward to seeing my OB here. We had a weeks holiday in Toronto. I was barely able to walk - severe pains and labour bum ache all the time. After three days of no kicks, I said to Tim that something was wrong. He said it was because we were busy. Please baby - just one kick! He did. Good enough, I said. We came back and my OB as on holiday, so I decided to wait. He delivered Thomas and was so good. By this point on my new dates I was 18 weeks, but original dates I was 20 plus.
My health was getting worse; I was unable to function, I could not lift thigns out of the stove, I could not walk more than 100 yards. Saw my OB and said nothing - what was the point. The drs had told me in the UK it was my age. I said I was tired. He felt my fummy and suggested I have a level 2 scan. I was so desperate to know something so I said yes. We drove the two and a half hours to Winnipeg and met for the first time a GC who told me I could have a baby with this or a baby with that. He showed me pictures - he wanted me to have an amnio. I said NO, never. I saw pictures of a T18 baby and I asked, "What's that?" He just said, "Oh, there is nothing we can do about that," and moved on. That's the first time I hear of it. Thies was the start of my crying - I bawled in the man's office. Tim was so cross - this was a waste of our time. "There is nothing wrong, let's go home." We argued. I said I had to know, so off we went for the scan. In all honesty, I had not been able to look at babies for 4 weeks. My bodyy cried out to me this was not to be. The scan, you know when something is wrong, don't you. They spend too much time at one area. The sonagrapher just kept going over his heart and stomach. I asked if all was ok and she said yes, but the baby's position was not good. Over 45 minutes later we were still there. She said the dr had to come and report on it and that he'd be in in a minute. Tim asked if all was ok and she said yes. He asked could he run out and put money in the meter where we were parked. Oh yes she said, so he went. Still she kept looking, so I asked again is all ok? "There is a problem with the heart, but it could be position, I am no expert," she said. "Liar," I thought! "Oh yes, and something with the stomach." Panic swept over me. Why had she let Tim go? Two drs came in and she whispered that my husband would be back in a moment. Fear like you know but could not imagine swept over me. The whispered and re-checked things. When Tim came back in, I grabbed his hand. I knew what was going to be said was not good. Yet never did it cross my mind it would be as bad as it was. Baby's diaphram is not here, so his heart has moved to the other side and he has two holes in it. Because he has no diaphram, his stomach has moved to where his lungs should be, look see. He has no lung, come down where the stomach is - can you see it? His throat is not right, he has a double cleft pallete. We think he has problems with his kidneys. He will never survive in you. The dr then drew a picture of our baby and showed us simply and clearly all his problems. He said he would not be able to eat and that they wouldn't be able to operate because there were too many things wrong with him. If he had just had a heart problem maybe we could do something, but with all the other things, he will not survive a surgery. I asked him, "are you telling me that my baby is dying?" He said, "Yes. We think you should rethink the amnio." Just do it, there did it and then no consent, he reshowed us our little man and all his problems and said we will know soon if this has been caused by something. The staff were as nice as you could be. They left us alone in the room and offered us a consellor. The reassured me that doing the amnio was the right thing. We left Tim holding me up all the way. My heart had already been broken. I knew something was wrong, but not this bad!
We drove home crying and in a daze. As we got closer to hom, the "how are we going to tell the kids?" Tim said he would do it. The minute we got out of the car they saw our faces, they asked what was wrong. Tim tried - he really did, but he lost it; he crumbled in front of the children. He could not hold it any longer. The children have never seen him cry, not even when he lost his Dad, so I told the children that the baby was very ill. He has no diaphram and would not be able to breath or live outside of me. That is when the heartbreak grew, as if it could. My big teenage kids all lost it. Heyley begged me to keep him in me forever. My lovely boys, God I have never seen them cry like that. We got the FISH results. He had full T18 and all the issues that went with that. Tim's decision was made, mine not. We went to see my normal OB who told us it would be best to sge. I said I cannot do that, I do not believe in that. He said, you are not donig that. You are a life support machine. He has no chance out of you. I went back and forth and then thought of my kids. How could I let them think there was hope? How could I? I would be keeping him for me and he was making me ill, so the decision was made. Back to Winnipeg, under the care of another dr who started me off. He was nice and gentle and spoke kindly of my son and of what we were doing. He reassured me my son would not feel any pain, and that it was the right thing to do. Everything was slow to get going, but I do not induce well. I had induction for Thomas, when I had my show, my heart was truly shattered now. I am still not the same person I was. I do not know if I ever will be. The T18 site pulled me from the very dark place and if I find myself tumbling back into it, it always pulls me out. I shall forever be grateful to you ladies for being there, and although I wish none of us had gone through this, I am glad I am not alone. xxxxxxxxxxx Denise
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