381203 tn?1231551357

Please keep them in your prayers

I just wanted to let everyone know what is going on with Fyrefly.

Some of her email to me:

"I have some sad news. Alex (her baby) has severe HLHS and the doctors don't feel that he would survive surgery. We have had to make the difficult decision to terminate the pregnancy. We have cried and cried and tried to find some ray of hope to keep him but he would suffer more in the end."

"We went Monday learned it was a boy and then a few seconds later about the heart disease. We met Tuesday with a cardiologist then a pediatric cardiac surgeon...Wed I met with my OB then Thursday I met with another physican who specializes in termination. I go this Monday for luminary then Tuesday I will be induced and give birth to Alex later that day."

Please everyone keep her and her family in your thoughts and prayers.
To everyone having a healthy pregnancy, don't take it for granted.
12 Responses
304970 tn?1331425994
**very sorry to hear**

They are in my thoughts and thank you for the update.
Avatar universal
I am soo sorry to hear you and your family are in my prayers please keep up updated on your condition.  Gods blessings
Avatar universal
OMG... my heart goes out to her. I'll keep her in my prayers. This is a terrible thing to happen to anyone.. and wish no one had to go thru this nightmare!!
427258 tn?1266445242
i am so sorry to hear about all this. my heart is breaking for you and your family. i can only imagine the heart ache, but please know we are all here for you and praying for you.
486679 tn?1234575929
i am so sorry to hear such sad news..i will keep their family in my thoughts and prayers as im sure everyone else will do as well
422823 tn?1229736847
Im sor sorry to hear this, my heart goes out to her, I cant even imagine the pain. We will be thinking of her.....
427258 tn?1266445242
im not sure if any one remembers but medhelp member rdh1981 just recently lost her soon Cooper to HLHS i believe. he was only a few weeks old before returning to heaven.
453994 tn?1218780981
thank you all for thinking of us. i don't know what to say. i also don't know what to do. i have not seen a lot of posts about this type of heart disease. i have learned that it is congenital, happens more to boys and that there is nothing that i could have done wrong and nothing i could have done better. i am worried about trying again since i am at higher risk for having another baby with the same problems. do any of you know some one who has had normal follow up pregnancy after having a child with hlhs?

i need some serious support here. i have been keeping to myself and frankly, i am not doing very well.

we will get Alex's ashes returned to us i hope by Friday so that I can feel that he is with me again.

rub those bellies ladies. have the dh kiss them too.
Avatar universal
Hi Fryefly,

I just wanted to say that we went on to have 3 more children, all with great hearts, after we lost our son to HLHS in 1993. Some said it was genetic, I was told it HLHS was a "fluke". I pray for you to have a healthy family!
No one should ever have to go through something like this once, much less twice!
Good luck for your future family!
403255 tn?1278813266
I am not in the same situation by any means but I do know a lot about blaming yourself for things that are beyond your control.
Stay strong and don't let this put you off gettiing pregnant again, conditions that are genetic offer the same odds for each pregnancy so you should not be at an increased risk of having this happen again and if it is not genetic then the same applies.
You have my deepest sympathy xx
503649 tn?1304357466
I'm so sorry you're going through this, the Lord will help you through this all.

I believe Rdh1981 who is on the Pregnancy 35+ board son Cooper passed for this condition.  If you go to her profile she has a page on there just for Copper explaining everything.  I know she is having a hard time with this as well, but is getting stronger with each passing day.  She is a super strong woman and I'm sure she would be more than willing to discuss things with you, that's why we/she are all here.

Stay strong and keep you chin up and you will make it through.

Avatar universal
Oh I am so sorry..Hope things get better soon..*Hugs*
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