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.