From the blogger Alison Epps, a mother of an extremely preterm boy, who writes at the blog 22w6d. Below the letter on her blog there are before and after photos of her son James at the age of 4 1/2.
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.
I echo your comments/sentiments. In my short career as a neonatologist, I personally had a rewarding and fulfilling experience with < 23 week infants so far and I often feel sorry when I hear that no active treatment was offered to many of these infants at birth. However, it is hard to get a consensus within a group of neonatologists to support this practice as there is wide variation in the perception towards these tiny infants. Some are pessimistic while some are optimistic.These infants stay critically ill for many weeks and change in service/attending brings a lot of variation in their management. I personally feel, if these infants are managed by 1-2 neonatologists in each group, who are passionate and believe in them, as an exclusive service like ECMO, to standardise the management, they will have a much better outcome.
You could well be right, I wonder if you know of anywhere that they do this. I think attitude has a lot to do with survival of babies at this gestational age, both obstetric and neonatal, they are a technical and intellectual challenge and a smaller ‘tiny baby team’ might be a good idea.
Nice to see this discussion progressing. I think neonatal community is warming up towards these tiny infants as evidence is slowly starting to emerge in the right direction. I like the name “tiny baby program’ and wish bigger programs with enough volume start exploring the idea of setting up such a program
This letter is a poignant reminder to all of us about our speciality of “imperfect science”. There will always be miracles but are we to make decisions based on anecdotes. What about ethical principles- balancing Autonomy against Justice, Non-Maleficence against Beneficence? Isn’t ethical decision an edifice sitting on these four pillars? Would you be comfortable with a lopsided edifice(decision)?
I think there is a lot more to ethics than those principles, which are in any case interpreted differently in any possible situation. I think the letter reflects how irrational rules like ‘not before 23 weeks’ are. James is alive because an Obstetrician messed up. Making precise rules based on imprecise information is silly. I don’t think we would ever have a rule not to provide dialysis to anyone over 80, if we were never sure how old someone was, would we? I think we should, ethically, take account of all relevant information which affects efficacy and complications. Age is just one factor, and not the most important.
The analogy to decision making in the extremely immature is clear; we shouldn’t have rigid rules, based on insufficient information, but make individual decisions with parents based on all the available information and their values.
I think the edifice is lopsided right now, and I don’t think this post is calling for decisions to be made based on anecdotes. Rather, it’s asking for more evidence to be included in the decision making process. The beliefs, expectations and values of the family, the baby’s weight, whether mom got steroid shots or not, the capacity of the hospital to support a baby at that GA (am thinking of “surprise” births at Level 2 hospitals, for example) … all of these are more pieces of evidence to include in the discussion. An arbitrary cut-off doesn’t leave room for any of this.
And a couple of other things to consider – I often meet to chat with women before they deliver. There have been quite a few situations over the years when a woman has revealed she is unsure of GA but can’t be open about it for privacy/personal safety reasons. So when we’re talking about GA being uncertain that is another thing to think about
And finally … it is not like birth is the only time when choices can be made about care. One of the loveliest welcomes that I’ve seen was of a 23 week baby who was bent on arriving before dad got there. The parents had had no chance to discuss what they wanted, and the doctor at the birth was just lovely – made it clear that the team would take good care of their baby while the parents discussed how/if to proceed.
And one final thing … for medical staff who have been doing this for a long time … what were discussions like when it became possible to save babies at 28 weeks, then 26, then 24? Haven’t we been through this before? Any lessons from the past that can be brought to bear here?