CHD

veetveet

We got some terrible news today.... and we don't know what to do.

We have to option to terminate (I am currently 25 wks 5 days) or to have a very sick baby on our hands.... a lifetime or surgeries amongst other potential complications.

The fetal cardiologist we saw was excellent- he was honest and I appreciated that. We asked him prognosis- he said up to 75% of children with this defect may live into their early 20's - with a lifetime of hospital visits and is susceptible to all kinds of respiratory infections that could lead to weeks of stay in hospitals along with potentially being put on a ventilator. There is absolutely nothing optimistic about my baby's life- his quality of life would not be that great. He flat out told us- we will bury our child in our lifetime.

We have a 3 year old at home.... I am worried about her- neglecting her while I take care of her brother. I worry about the stress it will put on my relationship with my husband. I worry about that little baby and the struggles he will not deserve to go thru. I worry about delivering a baby that will die in my arms shortly after.

I am so broken and torn I don't know what to do. I can't stop crying. My life went from amazing to a f'n disaster.

And I really wish he would stop kicking me.

I know it is my decisions.... but If you were in my shoes, please tell me what you would do.

Thank you.

veetveet

Sorry if this is the wrong forum to post in.

jonahsma

First I just want to say how sorry I am that you have to go through this. Second, I just want to hug you right now. I don't have any advice to give, just support and virtual hugs. Again I am so sorry.

veetveet

jonahsma said:

First I just want to say how sorry I am that you have to go through this. Second, I just want to hug you right now. I don't have any advice to give, just support and virtual hugs. Again I am so sorry.

Thank you. This is by far thr worst thing I ever ever had to go thru in my life.

shandorfml2

I am sorry you are faced with this decision. No one can make it but you. ((hugs))

kz's_girlygirl

I am so so sorry you are facing such a heartbreaking decision.  I don't have a personal experience, but a close friend had a somewhat similar situation. 

Her daughter was diagnosed with a heart condition called hypoplastic left heart syndrome at 22 wks, and she decided to carry to term.  While her baby had a life filled with uncertainty and struggle, there was also a lot of love, joy and happiness in that short span. Her baby went through 2 heart surgeries hours after birth, some smaller procedures and appointments to try to handle complications/infections, and another surgery when she was 18mos old.  The last surgery was too difficult and led to many complication and her daughter was in the hospital until she passed away at 22 mos old. 

During the times when her daughter was not in the hospital, their lives were very normal.  She and her husband also have 2 older boys.  When her daughter was in the hospital, understandably, their lives revolved around that and family members helped to pick up the slack.

There are also two incredible women in my support group who choose to let their babies go because of diagnoses that would have meant long and difficult procedures/extended complicated hospital stays, or a pain filled life for their children.  They loved their children unconditionally and chose the path that was right for them. 

I guess I am sharing this with you just to say that no matter your choice, it will not be an easy road.  Only you can make this decision, and it is not an easy one.  Please take the time you need to talk with your family, doctor's, even a counselor or spiritual leader might help you sort things out.  Whatever you choose, it will be a choice made from a place of love, and with your baby's best interests at heart. Know that you will be supported and not judged here.  

I will be thinking of you, and sending wishes for peace and clarity during this difficult time. 

Hypoplastic Left Heart Syndrome

Hypoplastic Left Heart Syndrome

bunnybun4

I am so sorry you have found yourself in this position.  I just sent you a private message.

((HUGS))

DevonBedford

I am so sorry you are faced with this decision. My DH and I had to make the same one in November. We were told our son had multiple severe heart problems, as well as numerous other complications all stemming from trisomy 13. Though they couldn't be 100% sure of any outcomes, we discussed that he would have a very poor quality of life, if he survived birth at all. With considering all of that, plus our two year old daughter and how it would affect her and what we would take away from her while focusing on Micah, we did make the heartbreaking decision to terminate.
It was the absolute worst decision we've ever faced and not a moment goes by that I wish the outcome could have been different, but we do know that the decision was right for Micah and for us.
I did harbor a great deal of guilt immediately after, but I have found some peace al

DevonBedford

Ing the way.
Feel free to PM me if you need support or have any questions.
*hugs*

Noethola

***Siggy warning***

I am so sorry you are even faced with this decision. I second kz's_girlygirl. Seek a lot of information and support, because whatever choice you make you will need it surrounding you. 

veetveet

marylaurena said:

I am so sorry you have found yourself in this position.  I just sent you a private message.

((HUGS))

stefuge

I am so sorry that you are having to make this incredibly difficult decision. I also agree with kz's_girlygirl to take as much time as you need and get lots of information and support to help you make this decision. ((Hugs))

Xath

*siggy warning*

I am so very sorry you have to make this heartbreaking decision. I don't have any advice for you, but I hope you and your husband can come to a decision that will give you the most peace possible in this situation.

veetveet

We believe termination is the best option- pending approval from the ethics board due to how far along I am. 

Just Devastated.  

Xath

veetveet said:

We believe termination is the best option- pending approval from the ethics board due to how far along I am. 

Just Devastated.  

So so very sorry.

VyD81

I so so sorry, I can't imagine how difficult it is for you right now. I agreed with @kz's_girlygirl, get as much support as you can.

My situation was different, the doctors could not give us a clear diagnose and the severity of his condition other than he had IUGR at 25 weeks and had a 50/50 chance of survival. I carried him till 29 weeks and he was still born. I don't know what I would do if I was given the option to terminate. 

Many hugs to you and your DH during this difficult time.

jess123456

So many hugs to you. We lost our baby girl to a terminal diagnosis in late 2012 (it was a trisomy). It's so heartbreaking and something that no parent should ever have to experience. There are some groups specific to terminal diagnosis on Baby Center too for moms who made the heartbreaking choice and those who carried to term. You guys will be in my thoughts and prayers.

jonahsma

veetveet said:

We believe termination is the best option- pending approval from the ethics board due to how far along I am. 

Just Devastated.  

 

I am so sorry I am keeping you in my prayers

Maybe Joleisa

I am so sorry ((hugs))

MCH77

I am so sorry about your son. It sounds like you have already decided what is best for you and your family. ((Hugs))

I agree finding a support group/counselor is important as you process this. My heart breaks for you.