HPLS - Left heart syndrome

[Nicolabee]

We went for an amnio at 16 weeks due to my age of 38. Our biggest concern was the risks associated with the amnio - so we thought.

nstead we walked out of the clinic with the probable diagnosis that our baby has Hypoplastic left heart syndrome or double outlet right ventricle or both! They can't usually diagnose at this early stage, so would suggest the severity of the condition.

We were advised to have an additional test done as a part of the amnio to rule out any genetic problems which sounded horrific, and the recommendation was termination.

We were told the best case was 3 open heart surgeries before our child is 2 and they probably wouldn't live past 6!

Thank goodness we have two healthy children who have kept our feet on the ground and made us realise how lucky we are, while we wait the two weeks till our 18 week ultrasound to determine a confirmed diagnosis.

We live in regional area with limited support services - and 3.5 - 4 hours from Melbourne.

My frustration was we were handed this "diagnosis" with no further information or access to support services for this 2 weeks. The major focus seemed to be on termination.

Has anyone else been in a similar situation? If I was to find this out later in pregnancy there would be no decisions and we would be going down the operation path to save our child. Instead we have been handed this at 16 weeks - and told we will have a decision to make.

As my husband says, if only someone would tell us what we have to do...

Instead we have another week to wait for the next ultrasound.