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Tuesday 6 July 2010

The end of the road.

Before I say anything else I want to say that I am going to hide the comments in "the other thread". It is painful for me to read them at this stage. I am not going to delete any, I do not agree with censorship, and I will not go to moderated comments unless I really have to. But please, think before you comment.
I have had several DMs from people saying my being open and public about my experience has helped them and others. Much as I have felt at times that it was a bad thing to do, maybe in some small way it is worth it. I initially told about Finn's condition because I wanted input and opinions. I got 5 comments on my original post asking for that, however when I blogged saying that we planned to terminate I got 35 (on the blog alone) I had people looking me up and sending me messages on facebook. I found this rather disturbing and set my profile to private.

I want to blog about this now because talking about it is cathartic to me, working through my feelings, ranting on twitter and whatnot. I also want to respond to some of the things that have been said. I am glad that I did not step away and end up deleting my account. We've had so much support from friends and it all matters so much to us.

I think that when I thought about termination of pregnancy before this I thought of a surgical termination. I had more than one DM telling me that my child would feel the pain of the surgery with the procedure. In fact at the stage of gestation I was at, 21 weeks, the only way the NHS will do it is via induction of labour. I have read on abortion support sites that some countries like the US will do a D&E on women having later term abortions up to a point. This would not have been an option for us as we wanted to meet our little man. Essentially it was the same as us opting for the "comfort care" choice (ie giving birth and letting nature take its course) except rather than carrying to term, we chose to induce labour early rather than prolonging the painful situation for a further 4.5 months.

A major what if for me was - what if we had never found out about his condition and he had been born like this with no prior knowledge. From the information that I have been given by the cardiac team at GOSH, babies like this diagnosed at 20 weeks do not suddenly "get better". Sometimes the development of the heart leads to more complications later down the road. But they could tell me with certainty that his condition would not have righted itself. It is however quite possible that further developments could occur leading to his condition no longer being viable for treatment. When we discussed the option of "comfort care" (ie delivering at full term, but opting not to treat but letting him die of the condition) we were told many parents do then opt to treat because once they have met their baby they do not want to withhold treatment. I never considered this as an option because if we were to carry him to term I would want to give him a chance. Either we end it early or we go the surgery route. I see little point in the comfort care choice and would worry that he would suffer.

They assured me that in this case he would not, he would just become sleepier and sleepier until dying from the gradual shut down of blood flow to his body. We would have the option of delivering at another venue OTHER than Norfolk and Norwich and subsequent transfer to GOSH if we wanted to go this route but definitely did not want to go through the surgery. In other words, if he was delivered anywhere BUT Norfolk and Norwich/GOSH it would be pretty certain that my son would die. We had planned a homebirth. Chance are as I see it that had we not known about his condition, my son would have been born at home, become sleepy and I may have even thought I had hit the jackpot and got a sleeper, only to find him dead in his cot a day or so later. Imagine then the investigations, guilt and horror that would ensue. No, I am very thankful that ultrasound is available to diagnose babies like this enabling their parents to make a choice.

Induction started at 11am and he was born sleeping at 20.20pm. We held him, kissed him, he was baptised and we got to say goodbye. They took him away after a couple of hours, dressed him in a blue suit and blanket and took photos, hand and footprints. I received those today in a little box. I have not looked inside yet as it is all too fresh and raw. The hospital are to arrange a funeral for Finn which we will attend, his body will be buried at a local cemetery so we can put flowers on and visit him. This was really important to me as my mum and sister both lost babies and never knew what happened to their babies remains. Honestly I cannot fault the NHS for what they have done for us, they have been compassionate and caring, respecting our wishes as Finn's parents right up to the very end.

I did feel upon looking at him that we had done the right thing for him. I know many will disagree and that is their right but essentially we did this to avoid all the pain and suffering he would have experienced. Putting a tiny one through three open heart surgeries and all that entails, with a high risk for complications and death anyway, and also the impact on our other children would have been huge. I am sure that we will have regrets and "what-ifs" but as our OB said... we made the right decision based upon the information we had and our personal situation at the time. Now comes the slow road to emotional recovery for all of us.

19 comments:

  1. Hugs, and Prayers for a full recovery. It will not come quickly nor easily, but I wish you all the best!

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  2. We've only "conversed" on twitter a few times, but I have your blog in my reader & caught what's been going on.

    I find your actions & decisions through all of this, and your public words to be incredibly brave. I can't even begin to imagine how all of this must feel & how hard it must have been.
    Hugs & prayers for you & your family.

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  3. Sending you HUGS! I can't even imagine the pain you went through coming to this decision. Wishing you all the best in your healing journey ♥

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  4. Claire you are incredibly brave to be so open and honest about your horrendous journey.
    You are a wonderful caring Mother and your darling boys are lucky to have you xxx

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  5. You have my thoughts at this very difficult time. 3 years later I still haven't been able to open that box I was given btw. Don't pressure yourself, you will deal with this in your own time. You are very brave

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  6. Claire, I will continue to pray for your whole family. For peace, for comfort, for healing. It's incredibly brave of you to have shared this with all of us, and I hope you are met with the support you need. Love & Light on you now and always.

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  7. Oh hun, so many hugs and love to you and your family. This could not have been easy for you all, how incredibly strong you must be. Sending you healing vibes. xo toni

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  8. Thinking of you and your family at this very sad time. Take care. X

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  9. Sending love, hugs, and peace to you. xoxo

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  10. I realized the other day that my comment on your other post might have been inconsiderate. I tried to delete it, but couldn't figure out how to do it. I apologize if it upset you in any way. It was never, ever my intention.

    You are so incredibly strong putting this out there for everyone to read & comment. Remember those you have helped & hopefully the naysayers will fall away.

    Thinking of you and yours in this sad time. Through all the pain, you did the best thing you could have done for him. My thoughts and prayers are with you. Take care.

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  11. You are one of the strongest, bravest, and courageous people I know Claire. My condolences are with you and Gary. I know times are tough, but we'll all see you through!

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  12. Peace to you and your family. I'm so sorry you all had to go through this.

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  13. You are an incredibly strong women, and I extend all the love that I can through this internet connection.

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  14. I'm here from a link in a discussion about families in situations like yours. I just wanted to thank you, deeply, for sharing your story, putting a real face on this kind of heartwrenching decision. I wish you and your family peace and comfort as you continue to grieve and recover from your loss.

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  15. Reading this gives me the impression you're very brave, peace and hugs to your family.

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  16. You and your family seem so incredibly brave. Your story is very inspirational, and I wish you all a whole lot of peace and love

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  17. You are an amazing person, and so very brave. I am sorry for what you have to go through because of your decision, from the emotional pain to the harassment you may receive. You really are inspirational, and I wish you so much love and happiness.

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  18. The right decision in the long run was the one you made. I hope that knowing that you prevented him from life of pain helps you in your healing.

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  19. I read the other comments from the other thread. Few things make me more furious than showing lack of support to a woman who has made deeply the deepest of personal decisions about her body, her children and her family.

    I think you did the right thing. You know what was best for Finn and your other children and your husband and yourself. I have complete faith in your ability to make the right choices.

    You gave Finn a peaceful end. It takes a lot of love to do what you did. I admire your courage.

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