A Thank You to Our NICU Doctors

The Micro Preemie world was on fire last week.  I’m kind of glad that it happened on my first week back to work and that Kyle was traveling and that we had the 36 hours of the peak of the firestorm without power…I was crazy busy and barely opened my personal computer to see what was going on in the preemie world.  In truth, I’m glad.

In case you’ve missed the hubbub, there was an article in the New York Times entitled End of Life, at Birth . The article talks about the ethical decisions around medical intervention of babies born before 28 weeks.  I know that many people believe that I’m just a pessimist when I bring up these facts…but the article talks about the 30.000 children, like Owen, born before 28 weeks each year in the US of whom most will go on to have serious social, cognitive or physical problems.

Many preemie bloggers eloquently addressed this article.  My opinions are covered by their pieces, so I will share Jessi’s, Tricia’s, Heather’s, (as just a few) instead of add my own.  However, as I read this article and a similar one in 2012, I could only think one thing.

I am so thankful we live where we live.  I am so thankful to the doctors at Amplatz Children’s Hospital for never trying to play God and for handling the precarious decisions of extraordinary measures…or not…with grace and dignity for the individual families.

Since I was 24 weeks 0 days when I was admitted to the hospital and Owen wasn’t born until 24 weeks 5 days, Owen met what was considered viable at our hospital.  Whether or not to intervene was not discussed at Owen’s birth.  While I am pretty sure I know what we would have done, I’m glad we were never asked.  By not asking, it felt like the doctors were on our team.  It told me, that they believed that Owen had every right to be given the chance of a future.  No one attempted to play God.

We were lucky.  Had Owen been born 6 days earlier, we would have had to have had that conversation.  I have friends who had children at Amplatz in the 23rd week.  These babies were not assumed viable.  The parents had to choose whether to resuscitate and to what means to intervene.  I’ve been told by a couple of 23 weeker families that they were given statistics, and offered support from the social workers, but the doctor’s made no recommendations.  When these families made decisions, the doctors supported their decisions.  No one attempted to play God.

Another place that I often hear other preemie families talk of their doctors trying to play God is in predicting outcomes of the babies.  I can’t speak for every family at Amplatz, but I can say, I’ve never heard an Amplatz family say the doctors attempted to predict their child’s future.

In our case, when we were given Owen’s PVL and then Bilateral PVL with cysts diagnosis, we pushed hard to try to understand what it would mean for Owen.  The unknowns were terrifying and it didn’t feel like enough information at the time, but in hindsight, I am so, so glad that they only said, “this puts Owen at a significantly increased chance of Cerebral Palsy and global development issues, with the greatest risk to mobility”.  We then asked specific to the amount of damage that he had and the answer was only, “We’ve seen kids with similar ultrasounds have significant life long issues and we’ve seen kids with similar ultrasounds only have greater delays.  We can only wait and see”  They made no bones that PVL would impact Owen’s course (as it has), but they never gave us a prediction of who Owen would or could be.  No one attempted to play God.

When families like ours have spent large portions of years, or longer, with doctors, inevitably, we can find things that weren’t done to our liking.  However, I wanted to take this opportunity to say “Thank you” to our doctors at University of Minnesota’s Amplatz Children’s Hospital for never attempting to play God.

When I read the NYT article, there were plenty of ways that I could relate and plenty of emotions that were stirred.  I will not lie.  I’ve watched my child fight for his life and clearly be in pain and I have wondered if he’d ever forgive me for allowing this torture to go on.  However, when I look at that article and the Neonatologist questioning if parents are given adequate information and support in deciding how to care for their children, I can say, I really felt our hospital did an excellent job of communicating to us and supporting us.

I feel very lucky to live where we live and I am sorry that not everyone gets the same quality and supportive care.

Thank you, doctors, for giving this, a chance to happen.

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© Copyright Tatum, All rights Reserved. Written For: Ain't No Roller Coaster

13 thoughts on “A Thank You to Our NICU Doctors

  1. Tatum,
    You are such an amazing writer. I’m so glad that you live where you live as well and that nobody attempted to play God. And I’m so glad that I’ve gotten to know you and Owen as well. That smile is perfection and joy.

  2. Beautifully stated, Tatum. Just once a doctor (a fellow, really) told us Boo would amount to nothing. His superior took him not only off our case but off the neurology rotation and offered for him to find another role in the medical field.

    That doc is my hero. Because with Boo not only a year, he gave us the words we needed to fight. You do not know what any child will become, you only have hope.

  3. I remember a dark peroid after “my uk Owen” was re ventilated doctors told us the only thing left was to hit him with high doses of steroids… they have previously warned us this day may come and we “all” would have to decide whether or not to go ahead with this knowing the risks or let him go.. me & my husband was traumatised by the daunting descion we may need to make.. we truly thought we would literally have to sign a consent form or something.. when that day came we were “told” the plan about how they were going to adminster the steroids.. we were relieved that decsion wasn’t all up to us.. and we believe if we did object they would have listened.. but us not objecting was their non verbal consent. We had such a close relationship with the doctors I know in my heart they would of steered us in the direction right at the time.. we only had our trust in the doctors and our gut feeling in our hearts to go with..
    Unfortunately Owen has pvl and then a cerebral palsy diagnosis to follow.
    I read that report on another site and it hurt.. tho Owen wasn’t a micro premmie he became a very poorly 28 weeker
    It will always be that unanswered painful guilty question.. did we do the right thing?

  4. Pingback: End of Life, at Birth | Neonatal Research

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