Today I was contacted by someone who reads some of my posts on another board. She is almost 24 weeks pregnant and has just discovered her baby has HRHS (hypoplastic right heart syndrome). She contacted me because she knew my baby died from HLHS (hypoplastic left heart syndrome).

She has consulted with a cardiologist that I know to be one of the best in the country and he has advised that most babies will make it through the set of 3 open heart surgeries that are required, starting at birth and ending at 2/3, but then the prognosis after that varies a lot. Some children go on to do well, having a reasonable quality of life, and making it into their teenage years / early adulthood before needing a transplant. Others however do very poorly, never really recover, are in and out of hospital often for months at a time, and ultimately don't survive. He said he would not try to persuade them one way or another, but he said that if it was him in their position, he would terminate, having witnessed the devastating effects on the families (parents and children included), when things don't go well.

They have previously lost a pregnancy at 13 weeks, which her husband took very badly.

She goes on to say "I don't know if I could live with myself if we ended the pregnancy, but I don't know how I could possibly handle a child slowly dying, with my husband a wreck and my marriage in pieces either. I just have no idea what to do."

I replied to her as best I could, from my own perspective, but wasn't very satisfied with what I said. It sounded so negative, but I can't bring myself to sugarcoat things for her either.

If anyone has any words of wisdom or compassion about this situation that I can pass on I'd be grateful.

I dont have any words of wisdom that pertain specifically to your situation, as I have not experienced having a baby with HRHS, but I can say that you were right not to sugarcoat anything. There is no easy way to let your child die, I know, we made the decision to end life support for Henry after three and a half days when he showed no brain function. We could have chosen to keep his body alive, but we believed that quality of life was not what he nor we would have wanted for him. For me that is the crux of the question, but then a child with no brain function is not the same as a child with a heart defect -- there is no easy answer here, and it sounds like she (and you) already know it.

All you can do is what you did, send her a note letting her know how you feel, or how you felt, and the decision is ultimately theirs. I think when put in these kind of positions people really want to find answers, they want to be told what to do, or to be given some kind of guidance (I know we did, it was all new territory and it was very terrifying) but truly this is a path you must walk alone (you and your husband or partner).

Hugs to you Lacri...

I completely agree with everything Mindy said. No one is served by sugar-coating things. On the other hand, this is something that these poor people will have to struggle with on their own.

What a horrible situation. No one should ever have to make a decision like this. My heart breaks for this couple. as it breaks for all of us here.

Being faced with such no-win decisions when comes to the life of your child is absolutely tragic. I'm so sorry for this family, and for you, Lacri. We also made the decision to take our daughter off life support after two days after doctors said her brain tumor was inoperable.

I certainly don't have any advice for this family, other than to encourage them to read _Waiting with Gabriel_ by Amy Kuebelbeck. (http://waitingwithgabriel.com/) Amy's son Gabriel had HLHS. She and her husband decided to continue the pregnancy but not to treat the heart condition aggressively once Gabriel was born. He lived for a few hours. Of course, every family's story is different, and I agree that such terrible decisions are really only for the couple to make. But I find it helpful to hear other people's stories. So perhaps they might appreciate hearing Amy Kuebelbeck's story as one path among many.

Unfortunately, I fear they cannot be spared immense suffering no matter what decision they make.

This hit really close to home as we had to decide to let our precious Aiden go early. He had several heart defects but those were really the least of his problems. It was pure agony to make that decision and I think you did the right thing. What I wanted when I was trying to decide was a realistic idea of what to expect. I didn't want anyone to tell me to trust in God and love my child. I wanted someone to tell me if he was going to be in pain. The decision to end a pregnancy is so individual. I think if I had had a chance to greet Aiden while he was alive without being forced to hand him over for surgery, I would have taken it. But I couldn't let him be in so much pain and with no chance of a good quality of life.

I think the only thing we can do for someone trying to make this decision is to tell her the facts of what happened to our babies, and why we made the decisions we did. It is so hard to reason and look at all possible angles when faced with this decision. Knowing what other people did and why helped me to figure out what was important to me (quality of life, impact on my living daughter) and what I thought I could live with. There is no good answer, they are all bad, and realizing that makes the decision a little easier. In the end I chose what I, as his mother, thought was best for him, and then best for our family. Feel free to forward my blog address to her, if you think it will help.

Having been in both situations (albeit slightly different), i think the long term effects of meeting my baby and having some time with him will be less severe than the other. But then, i didn't spend a pregnancy knowing he might not make it and when he was alive, my big terror was for the life we would all lead if he survived in a very damaged state.

It is a dreadful position to be in and i feel for her so much. You might be able to advise her to look for the PASS (Post Abortion Stress Syndrome) website and forum, where you can read (but not participate in) posts about medical reasons for termination beforehand and get some ideas of the emotional consequences involved and then here and other places for some ideas of the consequences of not terminating.

The most dreadful Hobson's choice - both fraught with difficulty and pain. I feel for her and anyone else in that situation just so, so much.