Life After NICU

Quality of Life and Viability, The Debate Continues

I was getting ready to work on my blog, prepared to write about truly enjoying James’ third birthday without any of the anxiety that has come each year at this time, when I read End of Life, at Birth, an Op-Ed piece that appeared in The New York Times August 5th. The author, April R. Dworetz, is a neonatologist and an assistant professor of pediatrics, specializing in neonatology, at Emory University. After I read her piece and the comments that followed my plans changed.

Overall I agree with Dr. Dworetz, more information and more discussion with parents who have babies in the NICU will lead to more thoughtful decision-making. Parents need to be well-informed throughout their baby’s NICU stay. Just as in any other critical situation involving a loved one, you need to know what you’re up against, and what outcomes are possible. Part of that burden falls on the doctors caring for the baby, and part of that burden falls on the parents. Parents have to be willing to hear the information being provided, without that critical component doctors can only do so much.

I disagree that she, or any other doctor needs to make the life or death decision for me. With me, yes. Involved in discussions of risks, treatment options, possible outcomes (ALL possible outcomes, not just the bad ones), and complications, yes. Not in place of the perspective that only comes from a loving parent. This is after all a baby, with a unique set of circumstances and a unique outcome, not a statistic.

What really made my blood boil was reading the comments that followed the article. Some comments were from families who actually experienced having a micro preemie. I completely respect their perspectives and opinions regarding treatment and family involvement. They’ve lived it.  I was shocked that the majority of comments by others suggest babies born at 23 weeks, 24 weeks, 25 weeks, ‘all babies under 28 weeks’, ‘all babies under 31 weeks’ gestation should not have life saving measures attempted because the financial burden is too great and the outcome is too bleak. Ill-informed people suggesting that all of these babies have a poor quality of life, and worse, that the decision to save them or not be based on the financial burden they become to their family and society. Is that how we’re going to measure the value of a life, by the financial burden someone poses? That is a dangerous and  very slippery slope. I don’t want a political debate, but wow, I’m truly shocked at this mind-set.

Three 23-weekers, all born weighing about 1 pound, thriving and sharing the joys of childhood.

Three 23-weekers, all born weighing about 1 pound, thriving and sharing the joys of childhood.

Games of chase at the park.

The same 23 weekers enjoying games of chase at the park.

James Running

A 23-week, soon-to-be tube fed child, enrolled in PPCD (Preschool Program for Children with Disabilities), who will become part of the classroom of a local Special Education Teacher.

IMG_1209

There is no test James would have passed when he was born at 22 weeks 6 days, weighing 15 ounces, that would make any doctor believe this moment was possible.

I can’t even begin to put into words the anger I feel at reading the statements that followed this article. I have admitted before that I have a skewed perspective on the outcome of 23 weekers, not only from how James is doing, but because of so many others I know who are former 23 weekers and are thriving. I also know many 23 weekers who have severe challenges and require very complex 24 hour care. I know many children who were born full term with unexpected complications, who also require very complex 24 hour care. Does having these challenges make their lives any less valuable? Absolutely not.

We are quick to judge when someone’s life is unlike our own. When someone requires a wheel chair or a walker, when someone looks different, acts different, talks different, requires assistance to dress or eat, when they are dependent on a caregiver we assume they have poor quality of life. Who are we to judge? And If they do have a poor quality of life, it may be that we have contributed to that becoming a reality. As a society we look away, make fun of, and ostracize adults and children who are different from ourselves. When we begin to look with compassion, love, and respect perhaps we’ll have the perspective we need to determine quality of life.

Whether or not to perform life-saving measures is a very complicated issue. I understand that. I hope it is one that can be discussed after much education, with all possibilities on the table, and with a little compassion.

For more about this topic please check out, How Young is Too Young? Pushing the Limits of Viability

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6 thoughts on “Quality of Life and Viability, The Debate Continues

  1. More importantly, how do we know?! I had two boys born at 27w. Should we just throw them away? When I was born the presumed viability was 28 weeks. I echo your sentiment. I went into labor at 22w and my doctor was by my side – counseling, proffering options and making sure my husband and I were well-informed about the journey we were about to go on. Every preemie, every child, is a unique individual. No one has the right to unilaterally generalize what a life is worth.

    Those same commenters could get hit by a bus tomorrow. They could be stricken with cancer. Should we just end their lives now because it might get pricey?

    • I could not agree with you more. We don’t know what the outcome will be, all we know is what’s possible. My son is proof that a child born weighing 440 grams can survive and thrive. I know it isn’t always the case, but it is possible!

  2. People who have not walked in a parents shoes of a premature baby needs to keep their comment to there self i have a premature baby that was suppose to be a vegatable but he is a 3 year old active very smart little by that can work a i pad as well as a adult almost i am prode to be a mother if a premature baby go to keep the rest of my opion to myself for its nt nice ir polite

  3. It is very difficult for people to understand what it is like to have a preemie in the NICU. It is a constant roller coaster ride that is never fun. And the ride does not end when you get off! My daughter Joy was born at 23 weeks last year. Due to modern medicine and prayers she is doing great today. I hemorrhaged at 17 weeks for the first of 4 times because of 100% placenta previa, which turned into placenta accreta (which I believe was caused by 3 prior c-sections). After she came home from 121 days in the NICU, I wrote a memoir called “From Hope To Joy” about my life-threatening pregnancy and my daughter’s 4 months in the NICU (with my 3 young sons at home), which is now available on Amazon. It was quite a roller coaster that I am certain some of you have been on or are currently riding on. My goal of writing our memoir is to give a realistic look at what lies ahead to families with preemies in the NICU while showing them that hope can turn into Joy and that miracles can happen. Please see my website http://www.micropreemie.net to gain an understanding of what this us parents go through. Everyone makes decisions that are best for them. This is such a sensitive issue to us preemie parents and I think we should not judge. Thank you.

  4. Absolutely. ABSOLUTELY! I also think that the focus on viability and statistics also fails to take into account the huge range of outcomes across the board – there are lots of babies who “shouldn’t” do well based on gestational age and complications that end up surpassing everyone’s expectations, and there are lots of older prems who end up with lots of problems or even dying….and everything in between!!! One of my 25-weeker twins developed a brain bleed after birth and eventually needed a shunt. We later found out that the neurosurgery team originally hadn’t wanted to do the surgery, since “babies with her degree of trauma have bad outcomes anyway”. I was horrified to think that they were seriously considering not even giving her a chance!

    Of course, it’s important to have stats and information to assist the decision-making process, but it’s a fine line between trying to inform families, and encouraging them to make a choice they don’t feel comfortable with (or that may not be right for their situation and their child). I feel very strongly that this is a decision that is individual to the situation – what was right for me might not be right for you, and vice versa – but it is nowhere near black and white enough to suggest “all babies under x number of weeks should not be resuscitated” (or “all babies with grade III IVHs shouldn’t be shunted!!!”)

  5. Reblogged this on 22w6d and commented:

    In the spirit of Flashback Friday I’m sharing a post from August 2013. An emotional post where I get on my soapbox and discuss viability. This is the topic I always come back to. It’s the topic I think about all the time. I had some discussions recently with a mom who’s son was born early, 22 weeks 6 days, and doctors didn’t try to help him. He was significantly bigger than James, and probably older gestationally. Would he have survived? No one can say, but I believe he deserved a chance.

    I’ve been working with this mom on some information we’re going to mail to NICU Medical Directors across the country, hopefully next week. I know not all babies will survive. That is the heartbreaking reality of being born too soon. But I also know that gestational age is not an exact science. There is room for error. When a baby is born at 22w 6d, there is a very good possibility that their actual gestational age is over 23 weeks. My plea is for doctors to assess the baby, not just the number.

    I’ll share the letter I’ve written to the NICU Medical Directors next week, after it’s official and we start getting them in the mail. Until then, here’s something to think about…

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