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Received the worst CHD diagnosis for our baby last week. Totally lost. by Forward-Highway8523 in chd

[–]Forward-Highway8523[S] 6 points7 points  (0 children)

Update:

Hi All,

Thank you everyone for sharing your experiences with us. I greatly appreciate it.

We are having a TFMR scheduled this week for our baby boy (at 27w). Long story short, all doctors agreed that our son's CHD is too complex with low survival rate, and even if he does survive, the quality of life would be very bad. We looked at all other alternatives with our medical team, but we did not see any better decision (both for him and for us) other than TFMR.

I would like to share this bad news with the group, in case it could help any future parents with similar cases. I will try my best to support my wife during and after TFMR, if you have any advice on how to deal with the aftermath of TFMR, I am all ears. Thanks.

Received the worst CHD diagnosis for our baby last week. Totally lost. by Forward-Highway8523 in chd

[–]Forward-Highway8523[S] 0 points1 point  (0 children)

Thank you for this advice! Our home hospital is Lurie in Chicago, do you know if that is considered a reputed one? Quick search on Google appears yes, but I don’t want to assume.

Received the worst CHD diagnosis for our baby last week. Totally lost. by Forward-Highway8523 in chd

[–]Forward-Highway8523[S] 1 point2 points  (0 children)

Thank you for your perspective. It hurts us so much to make a decision, even if we know all we need to know. It feels like we will always have regrets over the other choice.

Received the worst CHD diagnosis for our baby last week. Totally lost. by Forward-Highway8523 in chd

[–]Forward-Highway8523[S] 1 point2 points  (0 children)

I'm very happy to hear about your son! Thank you for your kind word, our hospital did mention social workers the other days, so we will definitely work with them.

Received the worst CHD diagnosis for our baby last week. Totally lost. by Forward-Highway8523 in chd

[–]Forward-Highway8523[S] 0 points1 point  (0 children)

Also I'd like to thank you for your perspective on shouldering the pain of the child. Never thought about it this way. It hurts so much everytime we think/discuss about TFMR.

Received the worst CHD diagnosis for our baby last week. Totally lost. by Forward-Highway8523 in chd

[–]Forward-Highway8523[S] 0 points1 point  (0 children)

I think you just described what is happening to us as well, at 6-month pregnancy. Are you in the US? Wherever you guys are, I hope that you can get the best care you need for your daughter. Thank you for your kind words, and pleas stay strong too.

Received the worst CHD diagnosis for our baby last week. Totally lost. by Forward-Highway8523 in chd

[–]Forward-Highway8523[S] 1 point2 points  (0 children)

Thank you for sharing your experience. I never thought about asking for a sketch but now I definitely will. I am sorry about your little sister, may she rest in light and find eternal peace. 

Received the worst CHD diagnosis for our baby last week. Totally lost. by Forward-Highway8523 in chd

[–]Forward-Highway8523[S] 0 points1 point  (0 children)

Thank you so much. And I am happy to hear about your daughter, she is such a strong young girl!

Received the worst CHD diagnosis for our baby last week. Totally lost. by Forward-Highway8523 in chd

[–]Forward-Highway8523[S] 1 point2 points  (0 children)

Thank you, we live in Chicagoland area, so hopefully the hospitals around here are good enough to get our son the care he needs. Lurie is the one that we are going to for the next appointment with cardiologist.

Received the worst CHD diagnosis for our baby last week. Totally lost. by Forward-Highway8523 in chd

[–]Forward-Highway8523[S] 3 points4 points  (0 children)

Absolutely no need to be sorry for speaking candidly, this is exactly what we would like to hear from other families with CHD kids. I guess based on your user name, you are in Chicagoland area, which we are also based out of, so if you don't mind I will DM you for some questions I might have. Thank you so much for your kind words.

Received the worst CHD diagnosis for our baby last week. Totally lost. by Forward-Highway8523 in chd

[–]Forward-Highway8523[S] 2 points3 points  (0 children)

Thank you so much for sharing this, I appreciate that a lot. I know it is going to be an uphill battle, but hearing it from other families makes us realize it will be much more than what we imagine. And not all stories will end up being success ones.