Tuesday, 22 January 2013
17:38 | Posted by Caz | Edit Post
On Sunday, the independent published this article, exploring why the majority of bereaved parents refuse a post-mortem for their baby following their stillbirth or neonatal death. Until now sketchy information, complicated forms, inconsistent guidance and the scandals of the 1990s have been blamed for the lack of uptake in post-mortem consent. Apparently many parents go onto regret not consenting to a post-mortem and a lifetime of anguish with unanswered questions.
Sands and pathologists seek to change that with a new post-mortem consent package released yesterday, hoping that a simpler process will encourage more bereaved parents to give their consent or at least have a better informed decision whether they choose to have one or not. They challenge that along with hoping to find the cause of the babies death, that more post-mortem's could provide valuable information to researchers and reduce the numbers of future deaths.
We did not consent to a post-mortem for Anabelle and neither of us regret that decision.
I remember being told we would be offered one but that it couldn't promise finding a cause for her death, and that in most cases a cause was not found. Our gut instinct, before being told anything else was 'she's not having one' and we told them that, before they had the chance to tell us anything else. We didn't give them the opportunity to tell us about forms or about the process because we instantly knew we would not be putting our daughter through that, and so forms and processes didn't matter.
The Doctors and Midwives at the hospital didn't push the issue with us and respected our decision. I'm thankful for that. In our case sketchy information, complicated form and inconsistent guidance were not applicable because we didn't get that far with the conversation. We were just adamant as soon as it was mentioned.
While I understand the importance of research and the positive impact it could have on the future, as far as we're concerned having a reason for her death wouldn't change the fact she was dead. Neither of us could bear the thought of them cutting into her, or 'hurting' her when she was already so delicate. She was perfect and she didn't need to be disturbed; especially as they could not promise it was going to achieve anything.
We knew there and then we could live with not knowing why she died far better if she remained unharmed; if we had consented to post-mortem and still nothing found we could not have lived with putting her and ourselves through that for nothing. Instead we agreed to swabs and bloods from her and me, we agreed to placenta screening.
Those tests revealed nothing. She had no chromosomal abnormalities and I had no blood disorders. The only thing found was slight infection markers on the placenta, but not enough to have killed her, those infection markers were a result of the time it took for her to be born after she died. So we live with not knowing.
In the Independent's article Professor Peter Furness was quoted as commenting, “The death of a child is almost the worst thing that can happen to a parent. I say ‘almost’, because surely it makes it even worse not to know why.”
I'm not sure I agree with him, he isn't speaking as a bereaved parent, only a Doctor. It doesn't make it any worse not knowing why, the thought of somebody hurting her precious little body with knives and instruments is far worse than not knowing why. For us at least. Not giving consent protected her from more harm, knowing wouldn't change the outcome. She would still be dead, we would still be grieving, would still be hurting.
I think it is extremely brave for a parent to agree to a post-mortem for their child and I respect them hugely for the decision they made, as I expect respect in return for the decision we made. Maybe we were not brave enough, but we do not regret our decision, we are not anguished because we don't know why she died, only anguished that she died at all.
Our beautiful girl was put to bed whole, undisturbed and exactly as she left me and I find some peace in that.
- I'm Caz, Mummy to beautiful angel Belle and little miracle Xander, Wife to Jon. Twitter @cazem @bellepixelle
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