Wednesday 1 October 2014

Amnio Infusion

Yesterday, Whilst scrolling through my face book page I saw a post added by the American congress woman  Jaime Herrera Beutler who's baby daughter was diagnosed with Potters Syndrome at her routine scan. I have read their story before but this article was looking at how well their little girl is doing now and how she is awaiting a kidney transplant from her father. 

Her little girl appears to be the only child to be alive despite having Potters Syndrome. She is now 14 months old and very cute.

How has this happened ?

In America the medical care given has to be paid for and therefore if you have the money and the ability you can get treatment. The Beutler family were in a position to be able to pressure doctors into trying the very new and unconventional treatment called 'Amnio Infusion', where fluid is injected into the uterus to try and help the babies lungs develop. This then allows the baby to be able to breathe once born and is able to survive. They will still have a lot of medical issues but ones that can be dealt with. 

When Carrie was pregnant with Charlie we all did lots of internet research into Potters Syndrome and came across articles about Amnio Infusion. 
At one scan we asked the consultant if it was an option that could be given to Carrie. 
We were told that it wasn't carried out as a routine procedure in the UK for several reasons. The main reason appeared to be the cost of the procedure. There is also a high risk of either inducing labour or terminating the pregnancy. 
I remember the consultant saying that there were only a couple of places in the UK where they had tried infusing fluid into the uterus, and they had not had any positive results. 
We asked if it was an option that Carrie could be given the infusion and we were told, NO. 
We knew it was a new procedure and risky but surely if we wanted to give it a go why were we not allowed. 
It felt like they were deciding that Charlie's life wasn't worth the effort. 

Why should money be the deciding factor in offering possible life saving treatment.
It makes me very angry that this treatment isn't routinely offered to mums diagnosed with babies with Potters Syndrome. 
For the treatment to become more successful it needs to be carried out more. 
I know not every parent would want to go through with the procedure but it needs to be offered as an option. 

I am very happy for the Beutler family and it offers hope to families being told they are expecting a Potters baby, but at the moment only in the USA. 

I hope that this procedure soon becomes available across the world and makes the diagnosis of Potters Syndrome no longer a death sentence. 

Every baby regardless of whether their parents are rich or poor deserves the best opportunity and money should not be a deciding factor on if they live or die. 



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