Why do I feel the need to speak out?
Bear with me everyone, this is going to be a long blog and one that, hopefully, will allow you all to understand me a little better.
I was alerted to a recent thread on a popular website, where I was mentioned.
The topic of the thread was "knowing what u know now, would you do anything differently regarding NICU care?" I was instantly hooked, based on the title. My first thought was that it is nice to see other parents being proactive toward future care. This is not the case. A person posted that they would not resuscitate their preemie before a certain gestation. This was not received well. Then someone linked my blog (thank you, who ever you are) and quoted the post where Helen was listing issues relating to prematurity. This opened the flood gates for other parents to harshly criticize the author and then both myself (TPE-the preemie experiment) and Helen.
"My opinion about TPE and Helen Harrison is that they are VERY bitter women who are still angry with the hand they were dealt. Both rally behind a viel of "education" about the "hidden" risks of prematurity but I get the feeling from reading their writings that they just don't want to admit and acknowledge the truth that there are many, many good outcomes... because they consider the lives their children lead to be terrible."
After reading this I decided it was time to tell the story of how I was able to see the importance of accurate information given to parents and the parents right to choose.
One day a friend of mine asked me to join her for lunch. She was meeting a first time client and thought that her and I would like to meet since the client's daughter was born early. My friend suggested that I bring my daughter (who was around 2 at the time) so the 2 kids could play together.
When we arrived I was surprised to see the client was without her daughter. As we started talking we realized that we had a lot in common. Both of our girls were born at 25 weeks, both of us had premature rupture of membranes and surprisingly, both of us delivered at the same hospital (this was odd because the hospital was 90 minutes away).
I opened my trap and started spouting off about how I was frustrated with some preemie moms who say that they wish their baby had not survived. I told her about how the neo at the first hospital told me that I had the right to not resuscitate our daughter. I proudly told her how I flipped out on the doc and that I was then transfered to the 2nd hospital (the same hospital she delivered at) and how they told me that their interest was in saving my baby, and my care came 2nd (I haven't gotten into this much but I will at a later date). I must have gone on for 15 minutes about saving preemies and how mine was such a miracle. I was so immersed in my own glory that it took me a minute to realize that "the client" was looking very angry. I shut my mouth long enough for her to collect her thoughts. She then said,
"I wish someone had given me the choice."
She went on to tell me that the doctors at the hospital told her that her "job" was to endure the time she needed to in order to save her baby (her water had broken and she was admitted). Even though she was telling them that she wasn't feeling good, they ignored her. (this also happened to me at the same hospital-a story I will tell another time). She asked them about having another baby if hers did not make it but they just kept on telling her that her baby would survive. She asked them about statistics but they just kept on telling her that she needed to relax (again-also happened to me at the same hospital).
The time finally came when her daughter needed to be born (due to infection-secondary to PROM). She lost a lot of blood during the c-section and ended up losing her uterus. Her daughter did survive but was massively affected by her early birth.
Again she said, "I wish they had given me the choice. I wouldn't have agreed to all of the meds to stop labor. My daughter suffers so much. I couldn't bring her here today because there is no room for her equipment at this restaurant. I can't even have more children."
My world changed that day. I was able to see "the other side".
The parents MUST have the right to choose! The parents MUST be given information; the good, the bad and the ugly. I realize this is an uphill battle because so much of the information that is out there is either outdated or conflicting. But we all MUST work towards a solution.
By working together (parents, NICU staff, media, researchers, etc) we can create a NICU environment that respects everyone. The parents will be informed and the babies will receive treatment that is constantly evaluated and updated.
I know it sounds impossible. I'm not willing to give up yet though.
If what we post about here is hard for you to read, we understand. But, don't judge someone based on a life that they live and you do not.
I am not bitter. I am passionate.