It sort of happened. I had my first PTSD moment surrounding my job, although it wasn't at all what I thought would trigger it.
It wasn't caused by a patient, or a family, or a real live situation. Nope, it was caused by a book. A book that I had to read for a course I have to take in order to ensure I am competent to work in the NICU. The book is more of a manual and it's called "Neonatal Resuscitation Program, 6th Ed". I had to read it before taking the course to get re-certified in neonatal resuscitation. The book is divided into 9 lessons. Lesson one states that 90% of babies make the transition to extra-uterine life without any other interventions than drying, warmth and stimulation. They go from that awful blue-grey to pink and screaming while everyone laughs and cries and hugs. However, about 10% of babies need some extra help. Lessons 2 through 8 work through these extra steps using a handy flow chart. Generally the steps become more and more invasive. They including suctioning, providing free-flow oxygen with a mask, initiating positive pressure ventilation ('bagging' a non-breathing baby), starting chest compressions, intubating, giving epinephrine and fluid boluses to get the heart rate and blood pressure to rise, and needling the chest in case of a pneumothorax.
Lesson 9 covers "End of Life Care". In the rare event Lessons 1 through 8 fail to solve the problem.
Lesson 9 begins with a 'case study' of a woman who is admitted at 23 weeks in labour with ruptured membranes and a possible infection. The health care provider is suppose to sit down with her and her support person prior to delivery and rationally discuss what the family would like done when the baby is born. The health care provider should be sure to include in their discussion both survival rates, possible complications, as well as the possibility of providing only 'comfort care' to a baby who has a low chance of survival or a high possibility of 'morbidity' (ie: likely to have on-going life threatening problems). The family is then expected to tell the health care professional what they would like done, and the health care professional is suppose to respond that they will do everything possible in order to honour the family's wishes, however plans may need to be changed depending on the condition of the baby when he or she is born.
Yes, of course, this all sounds reasonable and well planned out.
Lesson 9 made it sound so simple. So clean. So clear. Books are like that.
But I remember that exact situation being much more messy, painful, confusing and terrifying. There was shouting, bright lights, running feet, blank faces, pain, pain and more pain.
The question asked by the delivery team moments after Aidan was born:
"What would you like us to do?"
Save him, of course!? (But he's so small...it's too early)
Don't hurt him?!!! (Oh, baby boy, I don't want them to hurt you)
*beat*
....?
"What's his condition?"
"Do what you can."
(Make this better. Make it stop. Turn back time. He doesn't belong on the table over there. He belongs with me. Inside me... Sorry baby boy, mommy's so sorry.)
***
Lessons 1 through 9 brought it all back. Brought back the pain of both deliveries. Aidan's that was the beginning of the biggest tragedy of my life, and Kaia's that could have been. It made me panicky and shaky thinking of all that Kaia went through after she was born. I remember reading her chart in the hospital during her first week of life, and noting how long, and how much effort it took to get her oxygen saturations to normalize. She was in a 100% oxygen at one point and they couldn't get her sats above the 60s. That's when they started nitric oxide...a method generally of last resort. I thank my lucky stars every day that it worked. It's scary to even think about what could have happened.
And I thought a lot about Aidan. His delivery. How rushed and overwhelming it was. How unprepared we were. How that question of what to do is not so easy when it's asked of you. I remembered how awful the NICU doctor was who came to 'assess' Aidan. He spoke with the nurse, took one look at Aidan, shook his head, turned around and walked out. He never came to tell us what steps had been taken to revive Aidan (oxygen? bagging? I don't *think* they intubated him...but I'm not sure....). The neonatologist never spoke with us at all. After he walked out, the nurse asked if I wanted to hold him. It was obvious he was going to die.
Reading that manual made me think back. How hard did they try to save him? Did they do everything they could? Could they have done more? What steps were taken? How far down the flow chart did they make it? I never asked. Maybe I should have.
Maybe most of all, it made me remember how wishy-washy our answers were when we were asked in the delivery room what we wanted done. We didn't scream "SAVE HIM!!! I don't care what you have to do!!!" Brian didn't follow the doctor when he walked out of the room, pulling at his sleeve, yelling "Get back here and do something!!!" I quietly accepted when they asked if I wanted to hold him, knowing what it meant. We accepted that he wasn't going to survive without any protest. What parent does that? Certainly not some of the parents I encounter in the NICU. The really tenacious ones reject any possibility of ever turning off the ventilator, insist everything be done, and often refuse to believe any bad news at all. Maybe if we had done that, Aidan would have survived. Maybe they are better parents than I am.
But, how hard would I have wanted them to try? My overwhelming thought in the delivery room after 'save him' was 'don't hurt him'. To save him, he would have had to hurt. Possibly a lot. Probably for a long time. Possibly for his whole life. I don't believe in life at any cost. Not for myself, and therefore, not for my child. Resuscitation worked and worked well for Kaia. My gut tells me it wouldn't have for Aidan.
***
The Neonatal Resuscitation Program condenses 9 lessons into a one page, easy to read and follow flow chart. This helps health care workers make fast, evidence based, critical decisions when newborn babies face life threatening situations.
If only such a flow chart existed for parents.
Did you have to make life altering decisions around your child's birth/death? Did you ever question those decisions in hind-sight? Was the medical care your child received transparent in its application and to your satisfaction?
We decided, along with the neonatologist at your hospital that Xavier was too sick to have a quality of life. We signed a DNR and had his ventilator removed.
ReplyDeleteLast night we were watching Grey's Anatomy. ***Spoiler Alert** if you watch...McSteamy died. They removed his vent. As the doctor was explaining what would happen afterwards,and how they were told he could either go fast or slowly, my husband piped up with "I've heard the same things told to me".
I question my decision to have him taken off his vent so quickly...I wonder if I could have taken my time, so that it wasn't all so abrupt. Time to get used to the fact he was going to die, you know?? But I was scared, scared he would recover enough to breathe on his own and not much else...I am ashamed to admit that, but there you have it.
Just wanted to comment that this entry is beautiful and so heartfelt. I think you are onto something when you talk about your gut telling you that resuscitation would not have worked for your sweet boy. I dont know whether you believe in God or not but I often think that in those moments, he truly guides us to make the right decision. I wanted so badly to have a c-section with Dash, I didn't want to go through the hours (days) of laboring with him knowing I would be delivering him stillborn. In the end I am so glad that I was "forced" to labor naturally as I spent those days in the hospital bed praying, crying and talking to him, really processing everything that was happening. There are so many what ifs and could haves when it comes to losing a child, but I think the bottom line is that we loved and still love our babies to the ends of the earth and we did everything in our power to protect them. I dont know how you do what you do (working in the NICU) but thank you for ALL that you do for those families <3
ReplyDeleteI loved this post. I graduated as an RN in June and I precepted in a NICU this past spring. I am extremely familiar with the NRP manual. One of the things that I took comfort in during my training was how much simpler it is on the medical side of things. I attended a few emergency deliveries and they were very different than they were when I was the one strapped to the operating room table. I had never entered a NICU before my son was in one and my fascination with NICUs began after he died. It was therapeutic for me in many ways, but a few things gave me flashbacks. It was a different hospital but the vents were the same/made the same sounds. One baby was having a pretty bad apnea episode and I was able to bag her (she was already pinking up, had normal sats and my preceptor kept her hand right by mine--lest any parents think a child's life was left in the hands of a student). I remembered what it was like to watch my son have an apnea episode that turned him gray in two seconds and I'd just be standing there, not able to help. It was great to feel that this one time I could help (well..."help" would be more like it). This one time I was charting and monitoring sats and bagging and no one tried to lead me to a chair across the room. I admire you for choosing to go back to the NICU after the loss of your son. I'm not sure if I'll ever get to work with preemies because I am moving to an area where there aren't any NICUs for the time being, but I do wonder if I will someday.
ReplyDeleteYou are brave. The thought of being anywhere near any ICU anytime soon is enough to make me sick. :(
ReplyDeleteWe didn't really have a lot of choice... The prognosis for Jack was never favourable once the neurologists had looked at his scans... I would like to think we made the best "choice" in his aftercare when it came to the organ donation thing (if for no other reason than we had just a few more days with him than if we had been sent home that say day as we were told he wouldn't make it. It was abrupt enough, I can't even fathom...). Of all the things I regret about losing Jack, the decision to remove support wasn't one of them.
Sorry you had flashbacks, I'm sure this isn't the easiest thing to do.
I skipped over chapter nine when I had to take my NRP. I also had that thought of Adrian not suffering being the most important thing. (for me Save him did not apply at 20 weeks). Hard one, coping with flashbacks. The NRP book is so clinical, so cold. Medicine, the way we learn it, is clinical and cold. It is the way we apply it that makes it human. And I could never be cold again with any mother in the situation that we have been in. (I don't know if I ever was, but certainly I could not now).
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