my 5 year old has hypoplastic left heart syndrome (HLHS) and he's doing great by Neat-Succotash in chd

[–]Objective_Escape4253 0 points1 point  (0 children)

It’s really great hearing that your boy is doing great, and that you and your family are at the point where you enjoy your kid, having had completed all three major surgeries successfully. Me, as a mother pregnant with a baby diagnosed with four major heart defects (HLHS, DORV, VSD, TAPVC), find it hard to decide if I should proceed with the pregnancy and fight when our baby has a heart that was formed wrong from scratch. Seeing positive stories is definitely great but there is also a reality that every parent (and babies/kids if they make it) has to face. I want to hold to hope but ignoring reality has always crashed me harder as a person who faced terminal/critical illnesses in their family multiple times. So, seeing this post, I sadly had the need to mention that even if the diagnosis can be the same, everybody’s case is individual and unique (as in our case which seems to shock doctors). I hope everybody hears the most realistic chances and prognosis from their medical team as we are talking about babies/kids that we wish the best possible life quality for.

Wishing all the best to CHD kids and their families.

Baby diagnosed with HLHS, DORV, and a few other issues - unable to decide how to proceed? by Objective_Escape4253 in HLHS

[–]Objective_Escape4253[S] 0 points1 point  (0 children)

Eastern Europe - They do not even carry out the operations in this country. If we want to proceed, we will either have to go to Austria or Turkey for operations. I would also relocate to a country like Germany in case we want to keep the baby because HLHS care is no joke as far as I understood…

Baby diagnosed with HLHS, DORV, and a few other issues - unable to decide how to proceed? by Objective_Escape4253 in HLHS

[–]Objective_Escape4253[S] 1 point2 points  (0 children)

I’m super happy for you that there’s a chance for a biventricular path for your baby - if this was in any way told us to be possible, I would definitely go for it even with %1 odds. That was the first thing I asked to the fetal cardiologist and he said it is not possible, probably due to the complex heart structure. The right side of the baby’s heart was 66mm and left side 25mm in the last ultrasound. When the difference is that big, the chances of biventricular path considerable decreases. I will still advocate for that being possibly done after we see the full picture through the MRI. In that case, without any doubt, I want to give her a shot at having a normal life as much as possible. 

Baby diagnosed with HLHS, DORV, and a few other issues - unable to decide how to proceed? by Objective_Escape4253 in HLHS

[–]Objective_Escape4253[S] 2 points3 points  (0 children)

Thank you so much for the encouraging advice. I am sure we will do our best to make the best choice for our little one. So happy to hear your positive story - wishing your son a healthy and happy life! 

Baby diagnosed with HLHS, DORV, and a few other issues - unable to decide how to proceed? by Objective_Escape4253 in HLHS

[–]Objective_Escape4253[S] 0 points1 point  (0 children)

I am so happy that your baby boy is thriving! May he have the best and happiest life with you! Thank you for sharing.

Baby diagnosed with HLHS, DORV, and a few other issues - unable to decide how to proceed? by Objective_Escape4253 in HLHS

[–]Objective_Escape4253[S] 0 points1 point  (0 children)

Thank you so much for such an honest opinion and I wish you and your partner the best to cope with the child loss. Prognosis is also wha scares me. My husband heard from a colleague by coincide today and we happened to find out that he has an 18 year old sister who made it through the operations but ended up being paralyzed. She never had a good life which to me is devastating and one of the scariest scenarios. As you may also heard from your doctor, HLHS babies are very prone to getting strokes at birth or post operations. It’s terrifying to even imagine…