Life After NICU / Viability

Dear NICU Doctor

There is an amazingly hopeful article in the NY Times about the survival of 22 weekers. I can’t begin to describe how I felt as I read that article. There are doctors who agree that viability could begin under 23 weeks. There is hope!!

The following letter is sitting in envelopes ready to be mailed, along with a few pages of additional medical information, to medical directors at NICUs across the country. I don’t think the timing could be better. This is my plea.

 

Dear NICU Doctor,

I’m writing to you with utmost respect and admiration for what you do.  In my eyes you are a hero. Doctors like you saved the life of my son against seemingly insurmountable odds. I hope you will take a moment to read this letter and look over the information included. It is important.

I am writing to you as a mom; A mom of a very special little boy born at 22 weeks 6 days gestation. My son James weighed 44o grams and was 10.5 inches long when he was born. Doctors attempted life-saving measures on James because of an error made by my OBGYN when I was admitted to the hospital, five days prior to his birth. A simple error that stated on Monday, August 2 he would be 23 weeks gestation. I was to receive my first steroid shot and first 20 minute heart rate monitoring, thankfully, one day early. James was delivered due to severe heart rate decelerations that became worse as the day progressed.  Had his heart rate not been monitored one day early, he likely would have passed during the night.

Like most hospitals, Baylor University Medical Center, where James was born, has policies in place regarding when life saving measures are attempted with micro-preemies. At the time of James’ birth they did not attempt life saving measure prior to 23 weeks gestation. Between 23 and 25 weeks gestation they attempt life saving measures only at the family’s request. At 25 weeks gestation they always attempt life saving measures.

James did not fit their policies. Had they known his actual gestational age, that one day would have made the difference between a chance at life and certain death. One day.

A friend of mine has said, quite often, “I think he was 23 weeks, or even 23 weeks and a few days.” She might be right. As you know, gestational age is not an exact science.  Errors exist on both sides, but very few hospitals take that in to account when determining, what they believe to be, viability.

James will be five this summer. He is an amazing little boy who spreads joy everywhere he goes. He is smart, really smart! He can count higher than 800 and knows his alphabet forward and backward. He even knows how to read quite a few words. He is full of energy and runs everywhere he goes. James loves life, and we cannot imagine our lives without him.

I write about James and tell his story to anyone who will listen. I do that because I’ve met too many families who were in our exact situation, but no life saving measures were attempted. I’ve met families who wonder, “What if?” What if their baby was given the chance James was given.

I know we are biased. We have a good outcome. I can’t imagine the agony you’ve witnessed and the pain some babies go through only to lose their lives anyway. I know that exists. I’m asking you to remember that the other side exists too. Please consider the fact that babies born under 23 weeks gestation have survived and thrived. When making decisions about a chance at life or certain death, please be mindful that gestational age is not an exact science. I’m respectfully asking you to take all of this into consideration, as well as the wishes of the family, when you’re making life and death decisions.

This is important to me.  I’m only writing to you after much thought and discussion about this issue. I am certain you have thought about this before, and I truly hope you will consider it again. I’ve included a brief medical history of my son for your review. I am very willing to provide additional medical documents at your request. I’ve also included a brief medical history written by a mom whose baby wasn’t given life saving measures. These are the moms who contact me and want to know more about James.

I will be glad to answer any questions you might have or provide further information. Thank you for your time and for your thoughtful consideration of viability under 23 weeks gestation.

Sincerely,

Alison Epps

 

James, seven minutes old.

James, seven minutes old.

 

James Reads

James, 4 1/2, reading one of his favorite books.

 

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6 thoughts on “Dear NICU Doctor

  1. Hi Alison, I’d love to talk to you directly about our experiences. (We also had a 22 week, 6 day micropreemie whom the doctor did not want to treat.) I’m pondering trying to organize a letter-writing campaign or something to the American Academy of Pediatrics, which seems to be the primary body that sets these standards. Would you mind e-mailing me at eruthford at yahoo.com?

  2. Hello,
    Thanks for this, I would love to share your letter on my blog NeonatalResearch.org. If you give me your permission, I would copy the text, and give a link to your blog, There are many neonatal professionals who read my blog, from around the world, I think it could help to change attitudes.
    Keith

  3. I met a lovely 5yo boy, another former 22w6d that was lucky to be declared a 23 weeker. His disposition is great as well as keeness to play with others.He has a few imparments-some celebral palsy ,though can walk if his hand is held, loved trampoline,hearing aids, speech impartment, but mother can understand him,his receptive language is fine as is his intelligence.Don’t know if he wore a diaper because it was a party to avoid accidents. He had a very rocky start, everything that could go wrong in a preemie did happen to him, but he made it. With his mums dedicated care, focus on maximising his development, stimulating events etc he’s really caught up a lot and is overall a healthy little guy with a great personality.Plus very well behaved and well adjusted.There are many preemies born later that have much more and mores severe impairments. It’s scary that 22w6d preemies option for life where informed parents who would desire that as well as being able to put in the extensive work later, only get that option really by luck.These extra early ones do need more research into evaluating their potential viability and outcomes.One can suspect that these ultra early ones are less of a gamble than the 24w -25w preemies in not having the worst levels of multiple impairments as it’s doubtful intensive ICU care can keep these 22w6d babies alive unless they are underlyingly strong. I do think that parental competency and capacity for active commitment to work intensively on their development needs to be considered too,

    • Hi Brigitte,
      Thank you so much for your thoughtful comment. It is a very big passion of mine and fight to have resusitation occur on purpose and not by mistake for 22 weekers. Changes are happening slowly, but moving in the right direction. I agree with your statement that it takes work, and parents need to be aware of the work and what is ahead of them. I can tell you it is a lifetime of work! Thank you Brigitte!

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