Friday, September 30, 2011

Quality of Life

Someone on Facebook posted this link to a tragic story in the news.  A couple sued their doctor and ultrasound technician after not being told that their son would be born missing 3 limbs.  The couple stated they would have chosen an abortion, and they sued for "wrongful birth".  They won the lawsuit.  You can read the story here:

I was surprised that of those polled on the site, 75% thought  a “wrongful life” lawsuit is not morally justified while only 25% thought it was morally justified.  I began to think about that and came to the conclusion that the 75% of people who thought it was not morally justified were representative of the 3/4 of the population who most likely have never had to truly think about quality of life and what that means for your child.  I fall in the 25% who have unfortunately had to turn the thought of "quality of life" over and over in your head until you feel dizzy, nauseous, and sick.

I don't know what the right decision would have been in this couple's case, but I do believe they had the right to make their own decision based on information they should have been given.  I don't agree with abortion, but just as a matter of argument, women choose to end perfectly healthy pregnancies every day.  This woman should have been given the opportunity to assess her child's quality of life, and make whatever decision she saw fit.

This story reminded me a lot of a friend of mine who I met in the NICU.  She was told that her baby would die in utero.  Then after several ultrasounds, the neonatalogists told her that they thought he had a chance.  He was born at 27 weeks, but was far worse off than most 27 weekers due to severe intrauterine growth restriction.  He ended up spending a year in the NICU and PICU, and sadly, passed away at home under hospice care.  She has told me before that she wishes he would have passed in utero rather than having to be subjected to all the pain of breathing tubes, spinal taps, blood transfusions, IVs, etc.  Although, she loved having the chance to meet her son, she selflessly says she would have rather never had the chance to meet him and he not have had to suffer.  If she had read the article above, I know she would have been in the 25% who thinks there is such thing as a wrongful birth.  

It may seem contradictory because while I say that, I am so thankful that the doctors were able to save my babies.  I've been told that the head neo-natalogist came into my recovery room and asked me, "How hard should we work to save these babies?"  I am told that I said they should do everything they can.  I do not have any recollection of this conversation.  I was drugged, had just endured an emergency c-section, and was in major shock.  I'm surprised they would have even asked me considering the state I was in.

During the first few days and weeks while they were struggling to live, I found myself praying an unthinkable prayer.  When we got news of brain bleeds and white matter in the brain, I prayed, "Dear God, if they are not going to have a good quality of life, please take them.  I give them back to you.  Although, it's going to kill me inside to lose them, I do not want them to suffer.  I do not want them to go through this life if they are not going to have a good life.  I pray that you heal them completely and give them strength."  Have you ever prayed for God to take your child?  If you have, then you know what it's like to contemplate "quality of life" for your child.

One of the worst days of my life was when I was told that Cade had bilateral vocal cord paralysis and would likely need a tracheotomy for life.  I remember holding him so tight against me sobbing uncontrollaby thinking that if I held him close enough, the doctors couldn't have him, he would be safe, and I would never have to hear their grim statistics again.  I understand now that he could have had a full life with a tracheotomy, but at the time, it felt like a death sentence.  I had handled so much bad news up to that point - they could be blind, they could be deaf, they could have cerebral palsy, they could have brain damage.  That was a breaking point for me during the NICU experience.  I have never felt more devastated than I did at that time.  We were relieved and thankful when we learned this was an inaccuarate diagnosis.

We are incredibly blessed that our twins escaped their rough beginnings relatively unscathed.  We've had our challenges and still have challenges to face, but overall, I know they will have a good quality of life, and that's all I ever wanted for any of my kids. 

I know what it's like to face the question of  "quality of life" for your children.  Most parents, fortunately, do not ever have to even think about it.  I would say to the 75% of people who think a "wrongful birth" lawsuit is not morally justified they should count their blessings that they are not in those people's shoes.  I would venture to say they may have a very different opinion if their own child's "quality of life" was in question. 

What better way to sum up my point than with a quote from To Kill a Mockingbird.  The wise Atticus Finch once said, "You never really understand a person until you consider things from his point of view - until you climb into his skin and walk around in it."


Angie said... true, our nicu experience is very recent, my trio has been home for almost 4 weeks. Im sure I have a lot to learn from you. Visting from the yahoo group.

Sarah Pope said...

I certainly agree that having a micropreemie has opened my eyes to a lot of things...just as you said, it's impossible to truly understand a person unless you've been in their shoes.
I won't pretend to know what this couple was going through. They are right, the doctor and technician made a mistake.
However, I'm saddened by the thought that this child will probably grow up to know that his parents would have aborted him if they had been given the option. What a terrible thing to know.
Despite the odds we were given for our babies, we CHOSE to have them resuscitated - ie, we chose life even though we knew they could face a lifetime of disability.
It's so ironic that you wrote about this, because I've been thinking about it a lot recently. There is no way this couple could really know what it would be like to raise a child with missing limbs before they had to...they wouldn't know what great things this child would be capable of.
The doctors who confronted me (when I first went into labor) suggested that I should not resuscitate Samuel because he would likely have a severe disability (like cerebral palsy.) At the time, they made it sound like death....but now I know so much more about cerebral palsy, and it makes me angry to think that they would rather a child die than have CP. That is crazy. As you know, there are many capable, beautiful, bright children with CP.
My point is...I can't imagine being in their shoes to make that decision. But that couple had no way to know what raising a child with those disabilities would be like before it happened.
It would be interesting to talk to them now and see if they would take it all back if they could (their pregnancy)...if they love their child even with his/her flaws. You know?
(WOW, that was a book!!! SORRY!)

Michelle said...

Sarah - I totally agree with you. I feel sad for this child on so many levels - first that he has to live without 3 of his limbs and secondly, that he will know his parents would have aborted him. My point was that she should have been given the information and been able to make the best decision she could at the time. I don't think I even understood all the possibilities that could have happened when the babies were first born. I feel so fortunate that they don't have any disabilities.

I've often thought about what a difficult job the neo-natalogists have when they have to give parents (like us) all the grim statistics or like my friend -when they have to decide whether a baby has a chance at life. Then they have to live with knowing that sometimes their predictions whether good or bad don't always turn out the way they thought. I've thought about how the neo-natalogists in our NICU had to watch this mother (my friend) suffer as she watched her child become sicker and sicker and eventually die because they thought he had a chance. All they can really do is make decisions based on statistics. I'm just glad I don't have to do that job.

The NICU experience has turned me into a very philosophical person, and I'm not sure if that's good or bad!

Jessi said...

We were given the option on probably 4 occasions to pull support. We were told, initially, that Jack was not viable. It's very hard to take advice from the medical community, because to some, Jack wasn't viable. Now to us, and two years later, he is thriving! How do they jump to those types of conclusions? There is too much grey, not enough black and white with this issues. I just don't like the blanket statements like "not viable", etc., because no one really knows.