Frustrated!

As a NICU nurse, I HATE those miracle baby stories. And no, your cousin's sister-in-law's boss' friend did not have a baby at 21 weeks who went home "fine". She didn't. No, she didn't.

I always want to say "the reason they're called 'miracles' is that they almost NEVER happen!" Yes, we've all seen them, but the vast majority of 300g 23wk babies either die or are severely handicapped. I understand not wanting to not resucitate your child, but to refuse tocolytics? Argh!

We had a sad case on our unit a while back, an ex-27wk preemie, who got really, really sick when she was about two months old, and lived (if you can even call it that) for another four months. We were coding her almost daily at various times, she was trached, on an oscillator with iNO, epi drip, dopa drip, milrinone drip... you get the picture. Grandma always used to say "whatever God wants to happen will happen." I wanted to tell her that I thought God had made his opinion pretty darn clear at that point, but of course I didn't.

On the other hand, there's no good evidence that tocolytics prevent preterm birth; at best they buy some time for steroids, but there are side effects. A patient who is "very preterm" might be bought enough time for a live but very damaged baby to be born.

uggg.......these people drive me nuts! Just want to shake them! I always want to say "God gave us these medication/interventions and the brains to use them for a reason". Especially for the 30 weeker pretermer, that wouldn't take tocolytics, beta, nothin', b/c her other two were 30 weeks and were "fine" after a few weeks in the NICU.

Now, if someone were to have a valid REASON, not just a lamebrain excuse, for not doing the recommended treatments, I am very open minded and willing to listen.

I agree that there are too many miracle baby stories. Not that there are too many miracle babies, but more that there are too many *incorrect* or misconstrued miracle stories, and too much emphasis placed on the miracles without telling the whole story.

I had a 24 weeker who developed grade IV IVH and who was clearly suffering, and we chose to let him go as peacefully as he could. Was it easy? Hell no. We had a 28 weeker a year later after a month of intensive efforts to delay his birth. I've heard people say that a 28 weeker is "guaranteed a normal life" if they make it out of the NICU. My son has had problems related to prematurity and problems not related to prematurity. I think there is some irresponsibility in informing people of what the reality is, not just the miracle cases. That said, I love my children, those here with me and those who have gone, with all my heart.

Anyway, while I believe in God and God's will, I do not think it would be His will to refuse treatment - especially something like tocolytics! That to me is like jumping off a building and saying, "Well, if God wants me to live, then I won't die even though I just jumped off a 70 story building." Yes, there are miracles, but there is also ignorance. Some might call it stupidity, and while I can see while some might say that, I also know it's stressful and scary to be faced with a premature birth and the consequences of that, and it can put some people into denial. Others have been so misinformed that they believe they are making the right decisions and doing what is best when they aren't. When my first son was born at 24 weeks, we were given all the statistics, but in the stress and fear of the moment, statistics didn't mean a darn thing. Some believe so desperately that they will be the miracle because the reality of facing the alternative is too much.

I'm sorry I went off on a tangent. I definitely hear your frustration and hope that in the future, any patient in a similar condition will listen to the voice of reason. You did the best you could.

Tiffany