Tuesday, August 7, 2012

The Doctor Is Not God

We absolutely love Jack's medical team. They literally saved his life in the NICU and continue to help him thrive today. We have doctors in our family and we love them. Jack's Grandpa and Aunt are both medical doctors and amazing ones at that. And Jack's Grandma is a highly talented nurse. So, yeah, we have a whole lot of respect for the medical community and the hard work they do. Just clearing that up before I begin today's post. This is something that has been on my heart for a long time...

The NICU doctor is not God. 

"He will have 70 shunt revisions in his lifetime"

"She will never eat by mouth"

"He will never walk or talk"

"He will be in a wheelchair"

"The gracious thing to do would be pull support"

"He will be paralyzed"

"She will have severe Cerebral Palsy"

"She will be a vegetable"

All of those statements have been uttered over Jack or over a friend's micropreemie, by a doctor. Probably well-meaning and all, but these kinds of statements, in my opinion, have no place in the medical profession.

Why you ask? Because doctors are not God. They cannot predict the future, nor should they try doing so.

I understand doctors have this tricky job of relaying statistical data to parents of preemies with brain bleeds. And that is really all they have to go off of - statistical data and their own experience. Where some cross the line and where this post is coming from is in the comments like "she will never eat by mouth." How do they even know this? Because this precious baby suffered a brain bleed? How do you suppose this makes a NICU parent feel? With the weight of the world on their shoulders, often deciding between pulling life support or not? Blanket statements have no place inside NICU walls.

Doctors cannot predict your child's future. They cannot predict how the brain will heal after a bleed. They cannot predict exact areas that will be affected (beyond MRI results). And they certainly can't tell you what the "quality of life" will be like for your child.

And boy, do I hate that term.

We knew Jack's likelihood of survival, based off of being a white male, born at 23 weeks, with a grade 3/4 bilateral bleed. We knew it was around five percent. We also knew that Jack would be getting a shunt. One day a doctor cornered us in a small hallway and really, for lack of a better term, "let us have it". He told us all about what he thought Jack's "quality of life" would be if we continued life support. He told us Jack would have 70 shunt revision surgeries in his lifetime. That he would be an invalid, probably in a long term care facility.

We left that discussion utterly and completely devastated. We got the message loud and clear. A guilt trip, really. The doctor was basically saying that the best thing to do would be to take Jack off of life support, and let him die peacefully. I remember the day so very clearly. We were getting so many mixed messages and trying to navigate the murky waters of micropreemie medical care. Jon and I just held each other and cried for hours. It was one of the worst days of my life. Were we being horrible parents for keeping Jack alive?

Thankfully, this doctor was not Jack's first, go-to Neonatologist. We later met with our #1 and came up with an action plan. We would continue life support until she knew, beyond a shadow of a doubt, that Jack would not survive medical treatment (organ failure, etc).We didn't want Jack to go through painful procedures and surgeries if it was useless and only prolonging Jack's agony. But, we wanted to try everything in the book, if, if there was a chance. No matter how small. And she respected our choice. She told us the statistics and continued to give us all options, all sides. Life or death in the NICU is a very grey area. She gave us any information that we requested. We knew that Jack had a very high chance of cerebral palsy (if he even survived). But, we also read studies (given to us by this Neonatologist) that suggested that not all hope was lost.

Thank God for this woman. Jack would not be here today if it wasn't for her optimism and willingness to treat our 23 week, "wimpy white boy" of a baby.

Being a NICU doctor is such a high and wonderful calling. There are many who excel at this job. But when you start playing Doomsday Doctor, somehow thinking you are all-knowing, God's own voice on earth, the absolute truth in predicting a micropreemie's outcome, well, that is where you cross the line from being a great doctor, to playing God.
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Kylie Hodges said...

I hear you loud and clear.

I was the mother who was told "your son will never take anything orally and be peg fed for life"

He was 2 weeks old. He hadn't reached his birthweight of 1lb 7oz yet.

I told her to just wait and see and keep positive.

I was right.

A lot of what doctors say are opinion, and yes, its informed opinion oftentimes, but they should be stating it as opinion not fact.

Our micropreemies have a resilience and spirit that goes way beyond mediciine.

Great post

Emily Real said...

You and Jon are so very brave. You really demonstrated your trust in God, NOT trust in doctors or science. Beautiful!

Becky said...

Thank you gor this post. I totally agree with every word you said! I am so glad we didn't listen to the dr. when he told us to take Bella off life support.

Jen said...

Our Lia was never supposed to walk or talk either. Tell that to our chatterbox 3year old who is running. Lia has been in OT and PT since 3 months old and it has made all the difference! Yes, she has CP but it is no where near the like vegetable exsistance the doomsday doctor predicted in the NICU when she was a week old. I am so grateful to the social worker who gave us hope. Never underestimate the power of hope! God has blessed Lia greatly and she is our sweet miracle!

Michelle said...

I love this. Fortunately, we were never told these things by our doctors. We had wonderful doctors. We probably weren't told of this because the twins only had grade II bleeds. We did, however, have a horrible ENT who came in to scope Cade when we noticed his cry was almost inaudible. He told us Cade had bilateral vocal cord paralysis and would most likely need a trache. When I asked for how long, his response was a cold "for life". I wept uncontrollably after hearing that. Not only was that ENT horrible with no bedside manner, but he was wrong! Cade fortunately only has unilateral vocal cord paralysis and has never required a trache.

I'll also never forget a nurse who told us that Camdyn was finally looking like a real baby at about a month old. Gasp! She was always a real baby to me - even when she weighed 18 ounces. She was still my baby and very real.

Michelle said...

I forgot to add that I've been following another blog of a couple who recently had 25 week twins. The little boy was in kidney failure and the doctors told them that if he didn't produce urine in the next 24 hours, he would likely go into cardiac arrest and die. He didn't urinate that day or the next 3-4 days. Finally on the 6th or 7th day of not urinating, he peed! He has been peeing since and is very much alive! He and his twin sister are still on ventilators in the NICU, so if you are the praying type, please pray for them. Their blog is www.drakeandkennedy.blogspot.com.

Jessi said...

Wow Michelle - I can't believe he said "for life"!! That is exactly what I am talking about... those words have so much power because they can literally devastate you!

I am the praying type and will definitely check out the blog you linked.

Amber Thompson said...

Thank you for sharing your amazing story. Your love and faith of god and your son are inspirational to so many of us preemie parents.

Kasey Mathews said...

Jessi, this is an invaluable post. I wrote about my similar sentiments here - http://www.kaseymathews.com/dear-pediatrician/

Anonymous said...

I am with you. I am currently 37 weeks pregnant. At 19 weeks and 6 days I was diagnosed with an incompetent cervix. At that point I was 5 cm dialated with bulging membranes. I had a cerclage placed succesfully the next day. At 20 weeks and 1 day, my water broke. My Perinatologist recommended terminating my pregnancy at that point. He was not being cruel. He was being realistic. I had a 1 in 42 million chance of carrying this baby to term. There are only 8 known cases similar to mine where the baby survived, and none of them made it to term. Viability was our goal. I was on bedrest for a month in the hospital and modified bedrest at home for the last three months. When I was discharged from the hospital, Zach had 19 cm's of fluid around him. I had resealed and he had more than enough fluid to help his lungs grow! My Dr's have been wonderful about supporting our choices for our family's future and giving us the information we need without pressuring us one way or the other. I will always be thankful to them. But, Zachary's fate was in God's hands and I believe that He has something vital in mind for Zach. We felt that if Zach was going to die, he would do it on his own without medical assistance in that direction. We decided to maintain the pregnancy as long as God allowed and hope for the best. If it wouldn't be fair when he had to learn to write his name, this baby would be named Parrish Gibbs Lu Arnold Wikham Ripps Sheller after his team!The cerclage comes out today. He has exceeded every hope we have by leaps and bounds and is already nicknamed SuperZach. I think the vast majority of Drs who choose this specialty have a calling that enables them to relay the difficult information they must, while supporting you. I will never forget being in the high risk ward and knowing that some days went badly. You could see it in the faces of the nurses and Doctors. But when they have something go right, they are the first to celebrate with you.

Christi O'Brien said...

I got chills as I read the 5% statistic. Thank God for Jack and both of his parents who are such fighters!

Anonymous said...

Our son is 7 weeks old today but only a little more than 34 weeks gestation. When he was a week old they told us he had a grade 4 brain bleed and that the nice thing to do would be to take him off life support. We cried more that night than ever before (I'm tearing up now because it's still so fresh). We were so confused because our little boy was doing so well for only being a week old. The doctor told us all the statistics and what life could be like if he made it. She told us to think about it over night our even for a few days if we needed to. Oh we needed to. At that punt our brains were mush and our hearts were broken. We didn't get much sleep as we stayed up praying. I think we both feel asleep praying. The next morning I was still confused but I just felt this urge to call our pastor. He was on vacation so I felt horrible but he actually answered and then told us he was in the same town and that him and his wife would be in to see our family. He gave us the best advice and that was to key God decide wether or not his life support needed to be ended by ending his life. Once we handed it over to God we started seeing his fight to live. That Sunday he pulled out his breathing tubes and never looked back. That's a fight to live in my eyes! Now he is 7 weeks old and just took a bottle. He is suck a rock star at too!

Thank you for your post! It's so wonderful to read about someone similar to us. This is the only one I read so far as I was just directed to your blog. But I look forward to reading more. Thank you for sharing your journey!

Jessi said...

Wow! Thank you so much for sharing your story this morning with us! I am continually amazed at our little ones! And welcome to the blog! I hope you will stick around and be encouraged in your preemie journey.

aubreythefeisty1 said...

My 24 weeker hits her due date tomorrow and we are still in the NICU. She has done amazingly well, and I thank God every day that her doctors don't think they are God--they are, in fact, all God-fearing men of faith. It can make all the difference in the world to a terrified parent to have a doctor give them hope instead of dashing any shred of it away. Only the real God in heaven knows what is in store for our little fighters.

Shelly Quintana said...
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