Wednesday, January 7, 2009

The Diagnosis

Well where do I start.

Its been a very emotional day for all of us.

As you know this pregnancy and birth has been a rollercoaster ride and a half!

We spoke with her consultant in length today.

They have confirmed that Sarah has no pancreas and she also has Neonatal Diabetes.

There is only a handful of people that have this condition, Sarah is as far as they are aware the 9th person to be born, only 3 are still living.

The issue for Sarah lies in a few places the main one being with her liver. Of the existing Children know to have this condition the 6 children that had liver damage all passed away within the first few months and the neonatalogist has suggested this will be the likely outcome for Sarah and for us to prepare for that.

As you can imagine this is all still sinking in and we are yet to talk to the other children about it as we are just not sure how and when to discuss.

For the moment we are thankful for the almost 6 weeks we have had with Sarah and will treasure what time she has left however long that may be.

I have managed to contact one of the other living Children, a little boy that lives in New Zealand. Drs had the same concern for this little boy with his Liver, thankfully his liver turned out not to be damaged and he is now 9 months old and thriving.

As you can imagine its all still sinking in, I am meeting with the Endo Team today to discuss things in more detail.

4 comments:

Melissa said...

Oh my God. I'm so incredibly sorry. :(

I don't know what to say.

Katrina said...

Kat,
I still feel so sad by this turn of events. I pray that Sarah is one of those precious babes who continues to beat the odds.

I'm so sorry that you are having to endure yet another huge hurdle...

Hoping that you have good news soon

**hugs**

Mel said...

I have no words, but you have touched my heart deeply! I pray that your miracle of life can defy the odds!

Anonymous said...

I hope things turn out well for Sarah I feel for you as I've been through similar situation

my little boy was born 6wks early with a bowel problem which then turned into liver disease after we couldnt get him off tpn and we lost him at 9 months old :(