hello

[cookies897]

Hi my name is Jackie and my son's name is Aaron he has Portal Hypertension, varacis and blocked splenic vein, we only found out in April of this year, Aaron is 9. Sadly Aaron cannot have the shunt done due to the blocked splenic vein and now sadly we are investigating if this is genetic. My first son Ryan died in 2001 due to Tetrology of Fallot and the doctors in Birmingham think that its related to my heart disorder as I also have Tetrology of Fallot whic sits in the 22 chromosone range. I find this all so hard at times. Aaron and I live in Scotland looking forward to going to some of the Scottish events

[Eleanorb]

Hi Jackie

My son Evan has portal hypertension; he doesn't have a portal vein (v rare apparently). He is 2.5 years old and was diagnosed after a major bleed when he was 9 months old. He has had two further bleeds very soon after and is in the process of regular endoscopies to band his oesophigal varices. We feel very much tied to the hospital (King's College Hospital, South London). Interestingly Evan also has a severe congenital heart defect called truncus arteriousus (also called common arterial trunk). I also 'find this all so hard at times' - sending you thoughts and strength from South London.

Eleanor x

[cookies897]

Eleanor xxxx thank you xxx its hard isnt it being tied to hospital ours is Edinburgh Sick Kids, sending thoughts and strength from Fife in Scotland xxxxx