Appointment with fetal specialist and pediatric cardiologist

I'm 25 weeks pregnant baby girl has a complete heart block I just had my first appointment they said all they can do is monitor for hydrops..the specialist already seen slight fluid in babys heart but nothing significant heart structure is good, and they won't even consider c-section before 36 weeks. Just looking for anyone having gone through this and baby making it everything I read on hydrops points to fetal demise they wont even consider steroids and she said it's pointing to fluid build up and I'm obviously a mess trying really hard to stay positive but it's so hard. 


2 Comments

So Sorry

by Swangirl - 2019-05-25 14:50:36

What a terrible painful experience you are having with this pregnancy.  Instead of a joyful positive time it's becoming continuous anxiety and worry.  I wish I had something encouraging or supportive to say.  Hopefully someone on this site will have a positive outcome to report and will help you get through this.  I wish you the best!

Foetal Complete heart block

by Selwyn - 2019-05-25 18:22:03

So sorry to hear of your baby's problem and your distress. On the bright side the outcome for babies without structural heart disease and complete heart block is a lot  better than for babies having structual heart disease, indeed some of these babies spontaneously get better. 

Steroids have not shown any benefit, even if there are associated antibodies. 

The problem with looking at figures of outcomes is that on a personal level they do not have any meaning. Where there is life, there is hope, and clearly babies survive complete heart block and go on to leave normal lives ( as I say, sometimes the heart block my disappear). My advice is not to research this problem yourself, as this will raise your anxiety levels ( I know, having talked to many patients with a grave prognosis, and having cancer myself).  Leave the management to those you trust. If there is a specialist you can talk to about your worries, do so. A trouble shared is a trouble halved, so congratulations on posting here, I hope it helps. 

I think, when dealing with difficult health problems, it is best not to think ahead, rather to take things on a day to day basis. It is far easier to cope with reality than that which the mind conjures up from thinking ahead- and lets face it, no one can predict the future, which is probably a good thing!

I will leave you with a little reality however from a study on the subject of complete heart block:

"Conclusions— This long-term study confirms that fetal AV block has a poor outcome when associated with structural heart disease and that spontaneous regression of AV block is possible in seronegative forms. The survival rate of >90% of our untreated patients with isolated forms of AV block raises concerns about any decision to intervene with immunosuppressive agents."

( By immunosuppressive agents, they will have included steroids).

 I hope this  little ray of insight  helps the black thoughts. 

With all our best wishes,

Selwyn

 

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