Anyone have a little one diagnosed with isolated interrupted inferior vena cava?

[Casper0611]

We of course do not know anyone that is pregnant or has ever been pregnant with a child with this.  We found out the other day and have to see a cardiologist to get more details.  The maternal medicine doctor that spotted it didn't know much to tell us because it is so rare.  1 in 5000 babies are born with it.  Just very scared for our little man.  It has been a long road already with a positive quad screen but negative harmony, a scare with the kidneys but they are fine.  Any words of advice or encouragement or anyone that has or has known someone that experienced this would be great.  

[cmropen]

Getting the news can be very overwhelming and stressful. It's normal to be in shock and go through waves of different emotions at times.

While I don't have personal experience with this, I did want to pass along that there are a number of organiazations out there with information and support resources for families dealing with congenital heart issues. Little Hearts, CHD Families, Children's Heart Association, Children's Heart Foundation. If you search Congenital Heart Defects (CHDs) the CDC has alot of info and resources listed. The American Academy of Pediatrics also listed physicians and specialists– might be a place to start for a cardiologist.  I mention these because perhaps these organizations have educational resources or could support you in finding doctors, local services, etc.

There's a great article from Cincinnati's Children's hospital titled "My Child Was Diagnosed with a Heart Defect – Now What?". I can't post the link here but it'll come up if you google. It's from a pediatric cardiologist and lists out step by step things to do after diagnosis along with links to resources. She also provides a list of questions to ask the doctor/surgeon which may be helpful to check out with the appt coming up.

Best to you and your family...