All Journal Entries Journals

HLHS

Aug 08, 2008 - 24 comments

I found out Monday that Alex is a Boy and also that he has severe HLHS. We have had to make the difficult decision to terminate the pregnancy. My heart is broken. I do not want Alex to suffer. This is the worst and hardest decision I have ever had to make. We love this little boy so much.

After so many consults and reasearching and every thing we have done to learn about this type of heart disease.... All signs pointed to him not surviving more than a few hours or minutes after birth.

I am so crushed.

Comments
Post a Comment
294043 tn?1354207946
by Helen72, Aug 08, 2008
I know what you have been through and how much you love your Alex.  No parent should ever suffer and have to make the kind of decision you made.  I know that you made the best decision for Alex.  

What you are going through is unimaginable.  I can't stop crying when I am thinking of you.  My heart is breaking for you and your dh.

Avatar universal
by allip68, Aug 09, 2008
I do not know you but I am so very sorry for the loss of your baby and for what you are going through.  I know you made the right decision for your baby.  

453994 tn?1218780981
by fyrefly, Aug 10, 2008
I appreciate your comments. I have been crying off and on all day since Monday. I have researched everything that I can.. reading tons of stories about this by other parents and have learned that these children with severve HLHS do not survive and suffer so much.

Monday I have to start the dilation process and I am not sure how I am going to get through this. My heart is broken into so many pieces. Alex is the glue.

I am having an amnio so that we can find out if he has any other issues and my husband and I will undergo genetic testing. We want to understand if this was just an isolated thing or of we carry genes that make heart disease a major factor. I never want to do this again. My Alex was my life.



294043 tn?1354207946
by Helen72, Aug 10, 2008
Oh honey, I can't imagine going through what you have to go through this week.  I pray it's an isolated insident and your genetic testing will clear you.  

458090 tn?1256321162
by sasparilla, Aug 10, 2008
I am so very very sorry.  I wish I could hug you.

453994 tn?1218780981
by fyrefly, Aug 10, 2008
Thanks guys.

This may seem odd but I have been sleeping with a stuffed animal that I had bought for him. It is so soft and I had bought one for a friend's little boy a long time ago and he just loved it. So I naturally assumed that Alex would.

Yesterday I met my friend who's twins died about 4 months ago at 24 weeks. She helped me find something to put Alex's ashes in. She and I sat at a crowded mall and ate lunch while crying together. It seemed like she and I were the only 2 in the whole place. I finally selected a piece of china, a sugar bowl to use. He will be so small that it did not make sense for a giant urn. I brought it home and showed it to dh and he seemed so disconnected. He has been keeping himself busy with work. I never really wished that I worked as bad as I do now. Some way to pass the time and keep my mind off of things and then reality hits me. No matter where I go right now... Alex is still with me moving in my body. I would not be able to concentrate on anything else.

My thoughts are so wild right now that I have a hard time concentrating on anything, I just can't understand why this had to happen to him. He is pure, and unspoiled in anyway. He did not deserve to have to go through this. My mind tells me this is for the best but my heart screams don't do it. I have not ever been so confused. I will do what my mind tells me is best I hope my heart can forgive me.

Tomorrow I will start the dilation on Tuesday I go into the hospital for the amnio and the induction. I don't know what to expect and I don't know if I should take a blanket for him ... some people have suggested having a professional photographer there to get some nice photos of him. I have to say that all my plans, hopes and ideas of him would be removed if I did that. He would no longer have this perfect angel face and have been a baseball star, or loved camping. He would always be the little boy in a blanket that I lost.

I know I am rambling. I suppose that is just part of it.



427258 tn?1266445242
by natemomma27, Aug 13, 2008
oh sweatheart, my heart is aching and tears are streaming down my face. i wish that there was something i could do to help ease or even take away the pain and hurt you must be going through. please know that if you ever need a virtual shoulder to cry on, or an ear to listen...i am here for you.

Avatar universal
by bethlab, Sep 17, 2008
My son has hlhs he turned 8 today. He has minor delays and has been through a lot. He loves life. I never regret my decision to go threw with the three surgeries. All are complete and he is doing well. I hope you never regret your decision to give up.

Avatar universal
by bethlab, Sep 17, 2008
Oh and for further information. My son may never play baseball but he loves camping, playing with his siblings... too many things to list. His heart may not be shaped properly but his love is supersized. Hopefully you'll get the "perfect" baby your holding out for.

294043 tn?1354207946
by Helen72, Sep 17, 2008
bethlab,

I am not sure if you got the full story of fyrefly's Alex, but his HLHS was very severe.  She went from one specialist to another trying to safe her Alex but the prognosis was very grim, corrective surgery was unlikely to save Alex.  She did NOT make a frivolous choice!!!   This was a very difficult decision made after a long battle with infertility.  I wish you had a heart and some empathy for other people's pain.  

Helen

Avatar universal
by Kash12, Sep 17, 2008
I agree with Helen ... we not here to be "judge" people. I personally feel that If I can't support them.. I rather not say anything at all.
There's no intention to start a debate here.. but she's a woman going thru a lot pain now.. and the least we can do is to hold her thru it.

Am very glad bethlab's son is doing good and my best wishes to the little boy for a happy and bright future ahead.

Fyrefly... I am sorry u lost Alex. He's watching over u from heaven and is safe in god's arms. Please don't be hard on urself and take care.

453994 tn?1218780981
by fyrefly, Sep 18, 2008
Bethlab,

How is the view from up there? Wait, maybe your so high up on your pedestal you can not hear me... I SAID, HOW IS YOUR VIEW FROM UP THERE?

     SHAME ON YOU! SHAME ON YOU for lurking around people's journals and bragging about your son to people who are in the position that I am in. Maybe you do not know how lucky you are to have a son who fell in the small percentage of success rates. How dare you post on MY PERSONAL JOURNAL making it seem as if all babies with HLHS survive and have normal lives.

     I am sound in my decision. I am not haunted by it. You have no power over me with your insults, or personal beliefs. So after this response I will think of you or your comments no more.... I will leave your comment up. I want others to use you as an example of how not to behave on this site.

     I will also leave you to waste the precious time that you could be spending with your son lurking around other people's journals and trying to instill pain. Maybe try something different today... like eating sugar in front of a diabetic, making fun of the mentally handicap, or stealing a blind man's cane. Those things all seem right up your alley to me.

To borrow a phrase that I feel is as disgusting as I find your comments..... from Monty Python... "I fart in your general direction"

For anyone else lurking around..... if you feel that you need to spread negativity don't. There is no need for it as this site is not intended to be a battle ground of morals.

For anyone that has shared in as painful decision as my own please do not let anyone affect or effect you. No one knows what it is like to make decisions like this unless they have been in our shoes. If you have had to make this choice please feel free to email me as I understand what you are going through and I share in your pain and discomfort.


377493 tn?1356502149
by adgal, Sep 18, 2008
bethlab,

Every situation is different.  While I am glad your son is doing so well, in fyrefly's situation, there wasn't any hope there.  I chat with her often and trust me, her heart is absolutely broken.  She didn't care if her baby was "perfect" or not, that was not the issue.  This was not some frivilous decision she made and if she could of, she would have had him.  Perhaps before making nasty comments to someone who is already in so much pain, you could take the time to fully understand the situation.  



377493 tn?1356502149
by adgal, Sep 18, 2008
You go fyrefly!!!!!  I must have been typing when you posted as it wasn't there when I started!  I am glad you didn't let those ugly comments bring you down.  I am proud of you!!!!!

439903 tn?1380137882
by Asking4aMiracle, Sep 18, 2008
i cannot believe how heartless people are, im shocked to see such hurtful words when someone is in such pain.

Fyrefly, your courage to stand up is amazing, hats off to you. im so glad to see that even though your situation is so sad and devastating that you can show people in similar situations, there is a life after tragedy!! people like that dont deserve the blessings that so many others do, yet loose everyday. i am so sorry for your loss, i learned about you through Helen. ever since i read your story, i didnt feel i had the right words to say to you. after reading what i have read today, anything i said would have been better then that!! God will bless you in His own time, if you can live with that, you can live with anything. thank you for your courage and again, i am so sorry for your loss.

453994 tn?1218780981
by fyrefly, Sep 18, 2008
Ladies,

I appreciate your support in letting people know that this is not the place for this type of behavior. So many people are afraid to talk about the dark side of pregnancy. I have to take a stand. There are more women on this site that have had to deal with such emotional pain but are afraid to because of people like Bethlab. I refuse to hide in shame over this. I refuse to allow people to think that they have the right to spill their hate on me. I love my son. I will always love him. I wanted him. End of story. I want women to know that there is life after this type of tragedy and that some day we all will be faced with decisions that others will frown upon. Maybe not today maybe not tomorrow... I hope and I pray that it will not be a the circumstances that I had.

I really had hoped to learn more about HLHS and help others. I had not planned to have renagades from peace busting in with torments and tauntings. May they find relief from the great anger that they have inside. I really do feel that what we hate in others is a refection of what we hate in ourselves. All we can do is strive to change and better ourselves, learn when and where to speak, to be kind to others and not be judgemental. I am still working on this myself. I hope some day to be able to have won the battle with it and become a better person.

Again, thanks for your words. It means a lot to me and to women who will read this in the future who have made hard choices.

Hats off to you!



419964 tn?1333301906
by msgorgeous, Sep 18, 2008
How cruel ppl can be is beyond me. I cant not belive someone would say such a thing. its rather rude and heartless. that comment made me very mad.

FYREFLY* i do not know you but im truelly sorry for the pain and heartache youve been through. I have no idea the extent of your pain as i  havent had to make a decision like yours. You looked beyond your feelings for alex you didnt want him to suffer and thats an amazing gift you have given him. He will always be with you :) again sorry for the heartache youve endured.

229760 tn?1291467870
by rdh1981, Sep 18, 2008
To All:
I hate to start a fight, but EVERY HLHS condition is severe. I know this from first hand experience. My beautiful angel Cooper returned to heaven from this condition on July 23rd. We were given that "option" to terminate, but I never even considered that. We choose to fight for Cooper, sadly we did not win the fight, but I still have 7 wonderful weeks full of memories with my little man.  Like bethlab said, the majority of HLHS patients do go to lead "normal" lives.  Yes, it involves frequent trips to the doctors, medication and sometimes even a heart transplant down the road, but what sweet little baby is not worth this???

I am sorry but aborting is just wrong! Let me ask you this ladies, if you were to find out that your child had a terminal disease, whould you not fight for your child's life??? I am sure all of you said yes, so why would not fight for your unborn babies life?

Babies that have HLHS are not suffering when they are in the womb, they are actually functioning like healthy babies.  Cooper did not suffer when he was born either. The doctors make sure of this. Yes it was extremely hard to watch him go through all this, but I have no regerts, I know that we did everything we could to give that little man a chance.  

Everyday is a constant struggle for me, since I lost my sweet angel. I am going to counseling to help deal with my grief and sadness. We are no faced with huge medical bills, we owe millions, but you know what I would do ALL OVER AGAIN!

Fyrefly, I am not looking from a response from you, because we already had this discussion. I just want to put this out for everyone else. It is just so strange to me that women that post comments about abortions get attacked and rightfully so, so why are so many of you supporting this abortion??

I sure many of you are going to send angry words to me too, but just remember I have walked a mile in her shoes and you have not, so those of us who have/had babies with this condition have every right to comment!

I too will be more than happy to educate any of you about HLHS. If you would like you can read all about Cooper's fight. We have a carepage for him. Just go to carepages.com and under the search part type in care4cooper.  

Every baby is worth fighting for!

Rachel

453994 tn?1218780981
by fyrefly, Sep 18, 2008
rdhl1981:

So you return. Funny, I thought you said you had nothing left to say that I wasn't worth your time. I suppose that was a lie because here you are yet again. I tried to be nice to you. In fact I was nicer than I should have been, I should have told you what I thought from the get go.

You are not welcome here on my journal. In fact, I view you as a selfish person who needlessly let her son suffer. Please stay off of my journal, I have not one single good thing to say to you. I will be happy to post our email converstation so that others may see how truely hateful you are. I wished you well before and I will wish you well again. But this is the last time.

I will delete all further comments that you make.

You again, made this about you. This conversation is not for debate, Write what you will on your own journal. This is about people spilling their hate and ideas on others. Please do not make this about anti or pro abortion. Do make it about people lurking and pouncing on others. Just as you again have done.

419964 tn?1333301906
by msgorgeous, Sep 18, 2008
I just would like to say thanx for the info and sorry for your loss. but this is her personal journal i think you should have posted it else where. She made the decison as a MOTHER OF HER CHILD SHE DID WHAT SHE FELT WAS RIGHT FOR HIM. PPL MAkE THERE OWN DECSIONS shes a greiving mother you should be ashamed of your self my dear. She posted this as a personal journal i dont even think i should have posted but i did but i had kind words to say.

Fyrefly im sorry i barged in on your post. plz do not take to heart the words rdh has said. you made the decision you felt was best for alex.

453994 tn?1218780981
by fyrefly, Sep 18, 2008
msgorgeous


I do not mind people posting as long as they are not attacking. I do appreciate you saying what you have said. You are right that this is a personal journal. Most of the people who post are supportive. Then there are the wacky few who think that they have a right to attack others. These are the poeple I do not understand. You are welcome to post. My main goal is simply to let others know that if you have nothing nice to say then you shouldn't say it at all. This was not meant to be a pro or anti abortion journal. In fact, I thought people should know that there are situations like this. People could have read it in silence and made decisons based on my experience. Some may read it and decide not to proceed with termination and some may read it and decide to keep their babies. I pass no judgement on either. It was a horrible experience that I pray no other woman will be faced with but if she is she needs to know that there are others of us willing to listen with out judgement.

I wish you well.


  





439903 tn?1380137882
by Asking4aMiracle, Sep 18, 2008
it doesnt matter if any of us support this type of abortion or not, it was her personal decision and the fact that she can stand today and say that it is ok for you to choose the choice YOU personally feel is right makes her a hero. whether or not i would have made the same decision is a different story and the same goes for you. good for you that you choose to let your child live, as you can see you got the same out come in the end. you are right, every baby is worth fighting for but if you personally feel that God has put you in the spot that you have to make this decision, its no one elses business to say whether its wrong or right. life is full of choices, you made the choice to get up today and even the choice to voice your opinion, what was wrong about the first opinion, it was an attack of words that what she did was wrong, IT WAS HER DECISION TO MAKE. deep down inside something must have been telling her to do it, and im sure it wasnt something that came to her over night and wasnt easy either. you go with your gut and how many times is your gut not right? usually 99% right. she didnt want to take the chance of letting Alex suffer, which in most cases is the main issue at hand. either way, i feel what she did was right for her and her family and Alex. what you did was right for you and yours as well and the fact that you now have whatever bills and challenges day to day is no one elses business but your own. is it possible to think that everyone is stronger then others in their own way. everyone has their own strengths and weaknesses. maybe her strength was knowing that her decision was what was best. to come and say that she shouldnt have termed the pregnancy is not right, you werent there and it wasnt your child or life. not every situation is the same, it may have been the same disease but thats where the line is drawn. of course this is my personal opinion as everyone else on here, this is her personal journal where she has a freedom to say what she wants without being attacked or put on the stand to defend herself about what is right or wrong, if you want to continue this, maybe you should take it out to the public forum!!

377493 tn?1356502149
by adgal, Sep 18, 2008
I honestly can't say what I would do if faced with the same situation, for the simple fact I have not been faced with that.  I have been fortunate in that respect.  I just don't feel its my place to judge, but to support someone who is hurting.  Anytime termination comes up, it turns heated.  Thats unfortunate.  Rachel, you know I respect you and I cried and hurt with you as I read Coopers carepages.  But fyrfly made the decision that she felt was right for her child,as painful as that decision was. Not that she ever needed to justify herself to me, because I would have been there for her anyway, but trust me, this was not an easy or unthought through decision for her.  I can only begin to imagine the personal hell she went through.  In my eyes anytime someone makes a decision that obviously was so very painful for her in order to do what she fully believed was best for her baby, she deserves and will receive my support and respect,just as you did in making the decision you did.



439903 tn?1380137882
by Asking4aMiracle, Sep 18, 2008
words well spoken adgal!

Post a Comment