Thursday, March 19, 2009

My reply ....



Here is a copy of my reply to the article and comments mentioned in the last post. It is just the way I feel and comes from my heart. I hope I don't offend anyone, the majority of the nurses who cared for my boy's were wonderful! But, early on there were a few struggles and hurtful things said. The reply I wrote was mainly due to the fact that one of the commenters on the article said "My issue is that even if your baby is one of the 18% that survive and one of the even smaller numbers that have no sequela, parents have no idea what kind of torture they are signing their baby up for when they say do every thing. Nurses try to be as gentle as possible obviously but nearly every moment of these babies existance is taken up by painful disruptive treatments that keep them alive. It is cruel and in any other population it would not be tolerated."

Here is my response:
I am the mother of a surviving triplet who was born at 24 weeks. If I would have stopped care as the doctors suggested I would not have my happy little miracle baby who is almost a year old and doing great! As for the comments made about torture. There are children undergoing painful treatments for cancer every day and I don't hear anyone saying just to let them die! As far as NICU staff goes, most were wonderful. Then there were those who acted angry at having to save my baby. I had rude comments made to me by nurses about "people treating their animals better" and was put under a lot of pressure from Doctors, until I finally put my foot down. What I am trying to say is that NICU staff needs to treat families with respect no matter what they decide, after all it is not your child. Maybe if you put yourself in their shoes, what if it were your child in the NICU? Or what if it were your child facing months maybe even years of pain and cancer treatments? Would you still feel the same way? If you don't want to save babies then maybe you shouldn't be working in a NICU. One thing is obvious these tiny babies fight hard for their lives. I held one of my boy's as he died and watched him gasp for breath, he died fighting. I will never forget this as long as I live.
Please be kind and watch what you say, you never know who may be reading your words!

4 comments:

Katie said...

I don't think the nurses that said those things to you should be working in a NICU. I don't think it's the place for them. Just because your baby is at high risk doesn't mean it shouldn't be saved. There is hope. There are babies born full term with more serious problems than my 25 weeker had, but you don't hear people talking about how you shouldn't save them. And that fact is, not ALL babies born that early are going to have major problems for the rest of their life. You have to ask yourself if you are willing to let a baby that could lead a perfectly healthy, happy life die... and if your baby does end up with disabilities, does it not deserve to live?

Courtney said...

I commend you for speaking out for all our micro-preemies! I cannot believe a nurse, let alone a NICU NURSE, would say such things! They obviously signed up for the NICU knowing what they were getting themselves into (maybe not knowledgeable of everything but the majority of what the job endures) and if they are not a supporter of the mirco-preemies and their families they no doubt about it should not be working in the NICU!! I know all us parents look back at those moments when our child was barely surviving and getting asked the question "do you want us to do all that we can do to save you baby" & getting told all the percentages for survival and disabilities and yet we said "YES!! please do all that you can do!!" then you hear of these nasty nurses that have such a bad outlook on the fact that they help a child survive! uggh, it just makes me so upset! I hope every nurse knows out there that we thank them every single day for letting & helping our babies fight to be the survivors that they are today! As for the negative ones, please just get a new job! Us parents are so fragile during and even after our child's NICU stay, and the last thing we need to do is hear articles voices these types of negative opinions!

Melissa said...

I agree with all of you--it is appalling to think that a NICU nurse could be so cruel and heartless. A NICU is an intensive care unit, thus all the babies there have special needs...some worse than others. But that doesn't mean they deserve to die. As far as I'm concerned, letting those babies die would be euthanasia. Now, if the baby was in really bad shape and the parents decided it would be in the baby's best interest to turn off the machines, that's one thing. But if a parent wants to give the child the chance to fight, that is their right. There are other babies, children and even adults who are suffering with life threatening illnesses and who are going through painful ordeals; and in most cases, doctors willingly do all they can to help them survive. Why should a micropreemie be any different? My baby is a 25 weeker who is only 5 weeks old at this time. I thank God (especially after reading that article) that my baby's nurses and doctors have a better attitude. I was never asked if I wanted everything to be done to save my daughter--they just did it. And they continue to do it because they love these babies. As a matter of fact, my daughter is the favorite there and the nurses fight over who gets to care for her...and she is the smallest baby in the unit even at 5 weeks of age. I realize that I'm lucky that my daughter is thriving and is doing pretty well. But she weighed only 1 pound 4 ounces at birth--one week older and 4 ounces less than Elijah. So I would imagine that the doctors and nurses at that hospital would have given me the same advice. If they had, and if I had listened, I would have given up on a child who is very clearly fighting for her life and is winning that battle. She is off the vent, is on the cannula 3/4 of the day, has no brain bleeds, and is tolerating her feedings. For all practical purposes, she is as healthy as a micropreemie at her age can be. So for all you doctors and nurses out there who think that trying to save micropreemies is a waste of your precious time--shame on you! You should not be working in a NICU. NICUs need practitioners who believe in miracles and who believe that even the tiniest of children deserve the right to live.

KM said...

WELL SAID!

Kathy