Wednesday, January 17, 2007

Dilemma

So this will be quick because I have to go to a meeting, but I need some suggestions.
If you have read the recap of the past 101 days post then you will know how terribly difficult Edwin's course was, especially in the beginning and in the dreaded days of the oscillator. To make a long story short, there is a family currently in the NICU with twin girls. One is similar to Edwin and is on the oscialltor at 100% O2 and max settings. The twins are less than 2 weeks old, and they are quickly learning that things are not looking good for twin B. The Drs and nurses seem pessimistic, just as they did in Edwin's case. We happened to have a very optimistic Dr in charge in Edwin's first few weeks of life, and he insisted we still had options and not to give up hope. I am unsure of how this attending sees things; but the parents are very concerned. The family has met our family, including the twins, and knows the rough course Edwin has had. They ask me questions about how long he was on the Hi-Fi and want to know what we experienced. I have no issue sharing our story, but I fear that they will compare their daughter to Edwin, and if the worst was to happen I would feel terrible. We are very blessed to have Edwin still with us, and in fact in our family meeting when the 2nd attending told us he had a zero percent chance of survival, we were also told in the subsequent meeting that if Edwin survived it would be nothing short of a miracle. I am hoping this family experiences a miracle as well, but the reality is their daughter is very premature and has sick lungs. The other issue is that English is not their first language and I am worried that when I say Edwin was sick too and on the oscialltor for 4 weeks, they will not understand if the Dr tells them there is nothing more to be done, because they will think of Edwin and say "but he was on it for 4 weeks and look at him now." I want to be helpful but also let them know that some things are just not always the same even when the treatment is similar. Maybe Edwin's lungs were a little more mature, I received steroids before their birth, I don't know if this mom did. There are a lot of varibles. I also don't want to go against the Dr's advice, and I am concerned that she may suggest ending treatment and they look to us and we are forced with a difficult job, because our story is that we were faced with that decision as well and waited it out until he received steroids and once he did he began to dramatically improve. I don't want the Dr to think we are telling them to go against her suggestion and giving them false hope.
So the dilemma is...should we continue to tell this family our story when they ask? Are we potentially giving them false hope because we don't know if their daughter is much sicker than Edwin? Are we violating what the NICU Dr's are advising by sharing our story? I am just very concerned because I want them to have the right information to make the best decision for their family. Does anyone have any suggestions?
Thanks

2 comments:

Lathan, Lauren, Logan, London said...

Gosh..that's hard. Although I think that if I were the other parents I would want to hear your story to give me any ounce of hope that I could hold on to. She probably knows in her heart that her situation is different but if you can give her some sort of peace and comfort I say go for it. What's meant to be will happen regardless.

Its just so sad that any family has to go through this.

Miracles said...

I'm sure the doctor's have gone through all the different scenerios with them. By talking to them to ease their minds somewhat, would probably help them through such a diffucult time.
When we were in NICU I would have appreciated one of the other parents talking to me, so when I had the oppourtunity to speak to other's I did.
When I finally did get a chance to speak to another mother, I know for me it was so comforting.
Don't worry about what the doctor's will think. They are doctor's they have a job to do and some of them go mainly by statistics. If I had listened to a lot of the doctor's about my girl's, I might have given up hope at the beginning.
There's nothing wrong with easing someone's mind. It actually might help those parents get more involved with the treatment their twins need. Nothing heals more than a mother.