Thursday, July 05, 2007

Hope

"Please, just tell me that it's not hopeless."

The dad had walked up just as the echocardiogram technician uttered the words, "Bad. That's very bad."

I'd caught his expression at the time, but he just walked away without saying anything and saved his request until she left. There wasn't much I could say.

The tech had showed me the defects she saw and it looked pretty complex, but I really didn't have any information that would be helpful to him. The cardiologist hadn't even seen the echocardiogram yet - it was still being transmitted to the world-class pediatric cardiology center (WCPCC) where we were planning to transfer the baby.

I took a deep breath and said a silent prayer. How to leave him with at least a little hope, but no promises? It's never easy.

"I can't promise you anything. Even the cardiologist at WCPCC can't give you answers until she reviews the echo, examines the baby, and maybe not until she does a cardiac catheterization or other studies to find out exactly what's going on. I can tell you that we're sending your baby to the hospital where I'd want my baby to go in this situation -- and that they can fix things now that nobody could fix 20 years ago. Your baby was born at the right time, in a part of the country where we have several nearby cardiac surgery centers. Your baby is going to the best one. It's not hopeless."

Then I watched him walk over to his wife and promise her that everything would be fine. I wondered if I'd said the right thing.

The transport team arrived shortly afterwards to take the baby to WCPCC. The next evening, we heard that the baby did have a correctable defect. She would require several surgeries before her heart was completely repaired, but it was definitely not hopeless.

4 comments:

Awesome Mom said...

I think that Echo technicians need to go through training to keep their mouths shut while doing an echo. I was also horribly freaked out by a technician that did Evan's first echo. I was already scared and worried that my son was in the NICU in the first place and then to have this woman literally freaking out about his heart made things so much worse. It was months before I could even watch another echo being done on my son. I could watch them do worse things to him in the hospital but I ran when the echo machine came out because of those memories.

Judy said...

The tech said it fairly calmly, but the words were horrible enough. The dad didn't need to hear them. I didn't know he was in the room until it was too late to shut her up.

If she'd just stuck to describing the anatomy, it would have scared him, but the editorial comment didn't help.

littlema said...

I think hope plays such a complex role in families dealing with life threatening health issues. A while ago I treated a girl in her 30's with the most agressive breast cancer I have ever seen. She went through all the different chemos, radiation and surgeries that we could offer. Right up until the end she was fighting and hanging onto hope. She turned up in our unit 2 days before she died via ambulance (even though she had pall care at home). It was clear that she was in terminal stages and very close to the end but she was desperately hoping that there was some drug we could give her just to give her a little more time and a little bit of hope to hang on to. I think you did the right thing. Sometimes hope is all that gets us through. People will often forget what you said and what you did but they will never forget how you made them feel and it is obvious you made the father feel that the situation was not hopeless - which is what he needed at the time.

Chris and Vic said...

Personally, living one minute, one hour, or one day at a time is intimately tied up with hope. I HOPE to manage (m)any diffuclt issues by breaking them down to minute-to-minute, hour-to-hour and day-to-day. To my way of thinking, you just have to stay in the present.

Nobody ever promised us a rose garden--I tell myself to let go of any "entitlement" thoughts. (For example, my own ex-preemie, Vic, will never live independently---there is no hope of that. But we can live with a fair degree of contentment and even joy if we take it one day, or one activity or task at a time.)

I, for one, have wanted to (re)define hope to suit my own purposes--call it "denial"--and I have had to be tough with myself and get/stay honest with myself.

I sometimes do quite poorly at this game and I find myself in what I call "chronic grieving," which cycles back from time to time relative to Vic's prognosis. I am not ALWAYS sad, but I go through cycles of being sad. I don't see that there is any help for this chronic grieving--it comes with the territory. At least for me.
Chris and Vic