Unborn baby diagnosed with univentricular Heart with double outlet right ventricle

[tinks80]

I'm new to here so will do my best to explain have posted similar in another forum.

I'm pregnant with baby no4 already have 3 healthy children with history of premmies as my c-section was stuffed up with my 1st no other complications etc.

Anyhow we went to our anatomy scan at 19w2d & we devastated to be told our baby girl heart hasn't formed at all & I was keeping her alive. The sonographer made an urgent appt to see the pediatric cardiologist on the Wednesday 5 days later.... After a long painful wait we got in to see the cardiologist & he did a fetal echocardiogram & fully investigated her heart then sat us down to explain she has what they call a Univentricular heart with a Double outlet right ventricle. She will require two surgeries the Glenn & Fontan one at 6-12 months the other at 4-5years. With a survival chance of 95%

Then he went on to recommend a amnio as babies born with heart defects carry the risk of chromosomal defects in 5-10% of patients. He was not at all concerned or worried for ds or trisomy as I'm only 26 & had 3 healthy children my 1st trimester screening came back 1 in 10,000 chance very low risk & there is no genetic defects in our family going back so far into 5-6 generations we've even covered cousins etc.

I'm at loss wether to do the amnio I'm scared the baby will abort n I'll lose her, but I also want to be prepared in case I fall in that 5-10% chance of something else being wrong. Were booked tomorrow to have a level2 scan done then discuss the amnio afterwards.

I am wondering if any of you mums out there have any info on this or could help me shed some light on what to expect? Am I safe to say that if the level2 scan shows no soft markers our baby girl will be fine? Or should I have the amnio? What are my chances of having something else wrong? I'll be 21weeks tomorrow too...

 

[Marleysgirl]

What would you do if the amnio DID show a chromosome problem? Answering that might tell you whether or not to bother.

We scored a 1-in-5 chance on blood tests of our son having DS. We decided not to have an amnio, as it wouldn't have made any difference to our plans - we'd have continued with the pregnancy. So the result would only have helped us prepare, it wouldn't have changed our minds. Andrew was born very prem with other issues but no DS.

 

[tinks80]

Marleysgirl, thanks for replying we decided not to put our baby girl at any further risk & not do the amnio the dr,midwife,OBGYN, cArdiologist were all really impressed with her level 2 ultrasound & have re assured us that she is growing amazingly & perfect & no markers were found so they're more than happy for us no to pursue the amnio.

 

[Aidedhoney]

Hiya Hun,

My son was born with a CHD, He has had 2 OHS and 2 cardiac caths hes now 2 and a half and doing fab, i used heartline forum and on face book i have several heart mummy friends, not sure whereabouts you are but a few of my mums there children have had the Glenn and are awaiting the fontan feel free to look me up on face book, Julie Crichton and i can put you in touch with them xx