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)
"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?