Our beautiful baby daughter Anabelle was born sleeping June 2010.
Blessed with the screaming arrivals of our gorgeous rainbow sons,
Alexander October 2011, Zachary November 2013 and Lucas July 2016.

After Anabelle - Raising Rainbows
Heartbreak. Joy. Death. Life. But most of all Love.

Tuesday, 22 January 2013

Post-Mortem

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.


4 comments:

Jaqui Ball said...

Perhaps the doctor who wrote the article should have listened to points of view like yours. You knew instinctively what was right for you and your angel daughter. Thank you for sharing such a difficult subject. Those of us lucky enough to have healthy babies cannot imagine what it must be like for others unless people like you are brave enough to explain.

Caz said...

Thanks for your post Jaqui, after reading the article in the independent yesterday I just knew I had to share what that decision felt like for me. Some might think we were too hasty turning down the PM, but like you said, it really was instinctive, and we knew we couldn't put her through that.

Maria said...

I didn't have a post mortem done on Thea either. I hated the thought of her being touched.

Now when I think back.... the only reason I regret not having one done is because that way at least I might have had a photo of her.

I know it's a stupid regret.... but I regret not having a pic of my little baby!

Caz said...

Oh Maria, that isn't a stupid regret at all.

I wish I had some wise words of comfort, but I know how regrets eat you up. I have many too, just not about this particular decision. Please know we made the decisions we could at the time, in the haze of shock and despair. You were not stupid then and your feelings are not stupid now xxx

My Photo
Caz
After Anabelle - Raising Rainbows. I'm Caz, Mummy to beautiful angel Belle and my wonderful rainbow boys, Xander, Zachy and Luc. Wife to Jon. Twitter @cazem Instagram @cazzyem
View my complete profile
Instagram

Lilypie Angel and Memorial tickers

Lilypie Angel and Memorial tickers

Blog Archive

Followers

Mumsnet Badge

mumsnet
Written by C.E Morgan. Powered by Blogger.