For They Know Not What They Do.
Posted by realityrounds on August 11, 2009
Our eyes meet briefly. She is desperate, and scared. I look away. The pain is intense. It makes it hard to think, hard to concentrate. She is six months pregnant and in active labor. There is no stopping it. All is explained to her. The slim chance of survival. The enormous chance of death and profound disability. “Do everything please. My baby.”
We do everything. The father watches us, stands over us and prays. His infant could fit into his hand. 520 grams, barely a pound in weight.
We do everything. Dry the infant with towels. Careful. Not too rough. Do not want the gelatinous, friable skin to break and bleed unto the blankets. Listen for heart sounds. Heart rate is barely 60 beats per minute. No need for chest compressions. We breathe air and oxygen into the tiny lungs. Careful. Too much air can blow a hole in the tiny lungs. Too much oxygen can cause lung damage and blindness. We walk the wire.
The physician intubates the baby’s trachea. The endotracheal tube is as small and narrow as a pen. The heart rate rises. Forgive me for sadness that the heart rate is increasing.
We rush the baby to the neonatal intensive care unit (NICU). The baby’s heart rate is still low, in the 70′s. We cannot detect a blood pressure. We handle the baby gently. Any sudden changes in movement and blood flow can cause bleeding in the fragile ventricles of the baby’s brain. His oxygen saturations are in the 50′s (normal is upper 80′s and 90′s). Forgive me for wanting to stop. We push epinephrine (adrenaline) into the tiny airway, hoping to increase the heart rate and circulation. It works. We flood the infants lungs with Surfactant, a soapy looking liquid medications, that keeps the baby’s alveoli (small lung sacs that exchange oxygen) from collapsing on themselves. His oxygen saturations start to rise, 80%, 90%. We decrease the amount of oxygen the baby is getting, so as not to further damage his fragile lungs.
Central lines are placed in the infants umbilical cord. We check a blood sugar. It is 12. (Normal is above 45). The clock is ticking. Every second with no blood sugar feeding the brain, the cells will die. We do not wait for the X-rays to start the IV fluids. We give a bolus, a whopping two ml of D10W sugar water.
His blood pressure is barely detectable. We give two boluses of normal saline, five ml each. The blood pressure stays low. We need to start a dopamine drip. The central lines are not in good position. We cannot risk starting a vasoconstrictive drug in these lines. This could cause a vasospasm in the vessels feeding the infant’s intestines, starving these tissue of blood and causing them to die. I start a peripheral IV in the baby’s arm. His skin is see through, it is not hard to find a vein. I cannulate the infant’s vein, which is as thin as a hair. He does not flinch. I flush the cannula gently with fluid. The baby’s skin is so thin, you can see the flush of fluid travel in the vein, up to his heart. Forgive me for being proud of this skill.
The father comes in the nursery to see his son. He touches the baby. The skin feels cold. The baby lays under a radiant warmer, on a warmer mattress, and he is wrapped in clear plastic to prevent further heat loss. The father talks and prays over his baby. The baby twitches and squirms in response. His eyes are still fused shut, he can not open them. We council the father again of the possible outcomes for his son. A 3% chance of survival while suffering profound neurological defects. We explain the chances of infection, heart defects, bleeding of the brain, chronic lung disease, cerebral palsy. The father nods his head. He only sees his son, not the future, not statistics. He wants everything possible done to save his son’s life. Forgive him for he does not know, can’t possible know.
We continue to work on this tiny baby throughout the day. Two nurses, a neonatologist, a respiratory therapist, constantly at the baby’s bedside. Ventilator, central lines, peripheral lines, four IV pumps, cardiac monitors, leads, tape covering the baby’s arms, abdomen, and face. He lays there motionless, as the best of medical care and technology fight to keep him alive.
Forgive us for we know what we do.
RR
R. May said
I think that’s the hardest part of medicine. Figuring out just because it can be done – should it be. But its so often just not possible for the family who truly doens’t understand and is too tied up in emotions to think clearly .
Sad.
Diana J. said
You make the point beautifully. This is such a hard area, and one almost wishes we didn’t have the knowledge so that the ethical implications wouldn’t be up to us. I’m very much pro-life and still struggle with this issue. I think of what one midwife said about the Amish, and how they (as pro-life, conservative Christians) prefer to let premature babies die peacefully in their parents’ arms rather than trying to torture them into life. But as a parent, what would I do? Such a hard question.
realityrounds said
Diane,
It is hard because I lot of these parents have also suffered from years of infertility, and the pregnancy itself is a miracle. They could not image letting the infant they fought so hard to get, die. I often think that just because we have the technology, does it mean we should use it? The Amish seem to be wise in this area.
Joy said
I am also strongly pro-life. There is a very popular blog of a Christian family (her husband is a singer in the Christian band Selah). They knew their little girl would die either before birth, during or after. They held her for 2 hours before she slipped away. She most recently shared a video of their time with her in the hospital room and you just bawl to watch it. You may already be familiar with the blog:
http://audreycaroline.blogspot.com (Start at the beginning)
If it were me I’d rather hold my baby for as long as possible if I knew death was inevitable. Life and death are out of our hands in many, many cases.
Lisa said
How long did the baby live?
realityrounds said
Nine hours.
atyourcervix said
Even though we can, doesn’t mean we should. This is why I could not work in the NICU.
realityrounds said
The NICU has a high burnout factor, and let me tell you, I am on fire right now. It is not the work that gets to me, it is the ethics.
MomTFH said
Ugh, that hurt my heart. I think every health care practitioner needs to think about the really challenging cases like these when they choose a specialty. We are so lucky to have strong people like you to be good at the technically and, more importantly, emotionally difficult situations like this.
mamamia said
DianaJ brings up the Amish as letting nature(God) take its course, which is truly the most graceful way. Then again, as a parent in the moment who wouldn’t want all possible avenues taken when it is your baby. Sometimes I relly do envy those with so much faith as to be able to leave it to a higher power.
I can’t imagine how it is to see this day in and day out, esp. as a mom.
Sean said
Wow.. Thank you for this. It’s amazing how we can get caught up in what we do, we forget. You’re dialogue throughout this post was amazing. I think we all can relate to the annotated thoughts.
Tough.
Just….
Tough
realityrounds said
Thanks Sean. Some positivity can go a long way.
pinky said
That is a sh1t a$$ day. I extend my sympathy and condolence. I am sick of the stresses handed out to nurses each day. Why do we do this? We are good at it? When it is time to quit? When is it time to do something else for a while? I don’t know. Rhetoric questions all of them.
realityrounds said
Pinky,
It has actually been a shit week. I wish it was only a day…….
Joy said
*HUGS*
I think in cases like this, it helps the parents grieve to know that you tried to do what you could. They want to have hope and you gave it to them for those few hours.
I’ve also known families who knew their babies would die and spent the time holding them and loving them instead of rushing them to NICU where attempts would be futile.
It is a hard job you have and I’m so sorry you’re having a tough week. Nurses are amazing (my mom was one of them)!
M'Lynn said
Yeah, even with knowing what I know, I don’t think my head could keep my heart from sending, “Please, save my baby,” to pass my lips in that moment. Irrational, but I understand it. Then, knowing what I know, I’d hate myself for not just holding my baby.
Kathy said
This is really sad. It reminds me of something I read recently (I think from Man-Nurse), about “just because we *can* do it, does it mean we should?” — in regards to delaying an inevitable death with gigantic effort, that probably only caused more pain. It’s a difficult question, because you never know if somebody will pull through. Although, I think at some point, you’ve just gotta say, “Enough.” But that’s a decision for each person to make, in the given circumstances.
I’ve read that babies born at 24 weeks have a 50/50 chance of living (although many of the survivors will have developmental delays or physical problems of one sort or another). Does this number include all babies that are born, whether or not they try to save them, or is it just babies that they try to save?
realityrounds said
Survival statistics at 24 weeks involve a lot of variables. With no interventions it would a 100% mortality rate. With interventions survival rates average around 28%. If mom had great prenatal care, received antenatal steroids before 7 days of delivery, and the baby delivered at a hospital with a state of the art NICU, survival rates are about 50%.
Kim said
I think the hard part of this if it were me in the parents’ shoes is this…Personally, I believe in an afterlife and the will of God and Nature and wouldn’t feel compelled to do everything for the child. I’d prefer to say a peaceful if not heartbreaking goodbye knowing baby is in better hands.
BUT I’d be scared to refuse anything that was available medically (and this goes for practically any situation that may involve my children’s health/life) because someone might say I don’t care about my kids or that I’m not a fit parent because I didn’t try to save them.
Could my mental health be called into question? Could child protection organizations ‘look into’ my ‘case?’
Where does the border between peacefully accepting religious beliefs/the natural order of things cross over into unfit parenting? It seems to be a fine line, and it’s not a fight I’d want to fight in such a delicate situation.
lpnmon said
((hugs))
thank you for sharing. I hope you (and the families you help) find some peace.
Kelly said
As the mother of a 23 weeker, I often wondered what it was like on the other side…to be the one responsible for trying to prolong the life of these small babies. How hard it must be to be the one trying to bring life back into these tiny people, to prolong the sometimes inevitable.
People bring up a very valid point – just because we *can* do it doesn’t mean we *should*.
We had originally decided not to resusitate (pardon my spelling) our daughter, born at only 23 weeks. A few hours before her birth we changed our mind…and she is now a normal, healthy, and thriving 2 year old, caught up to her peers and with no signs or lasting effects of having been born so devastatingly early.
Because we can do it, does it mean we should? I don’t know. But if we don’t try we’ll never know.
realityrounds said
Kelly,
Wow. I rarely get to hear the perspective of a parent who has actually taken home a baby born at 23 weeks. I am so happy to hear your daughter is thriving. This makes me happy beyond belief. It selfishly validates what I do for a living, for a calling (it is not just a “job” for me). It can be very hard for me to resuscitate a baby of 23 weeks when I know what the statistics and outcomes are, but there are always stories like yours, which push me to continue.
Thanks so much for commenting.
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Wanderer said
I was that Dad. I lived that nightmare. I only had my angel for 8 days, but they were the most incredible days of my life.
The father nods his head. He only sees his son, not the future, not statistics. He wants everything possible done to save his son’s life.
I was a newly minted nurse, I knew the odds, the possibilities, the real chance that my daughter would die, but it didn’t matter. I saw only my daughter, the fragile little life that was struggling to survive. If the NICU team hadn’t worked so hard, she would not have even made it past her birth-day and if the NICU nurse hadn’t been so negligent (blowing her nose then touching the umbilical lines w/out washing or foaming), I still believe there was a real chance that my little one would be 3 years old this month.
People bring up a very valid point – just because we *can* do it doesn’t mean we *should*.
This not only applies to babies, but to the elderly as well. I find myself in that battle far too often in my job, so I feel your pain. Coding a 90-year demented, contracted nursing home patient is much worse than a baby, at least the baby has their life ahead of them if they survive.
Folks like you who work in the NICU are real heroes to me – I could never do what you do! Thanks for writing.
realityrounds said
Wanderer,
Wow. Thanks for your comment. I am so sorry you lost you little girl. I wish it could have ended up better for you and your family.
amanda said
Profound. I think we’ve all been in situations like that. I’m just speechless. Thank you for sharing this with us.
On another note, I’m taking submissions for the next Change of Shift so send them my way – agmcgaha (at) gmail (dot) com!
Lauren said
I see nothing profound about this post. The thought that the nurses caring for my child could have harbored such views gives me chills. My 4 year old son’s only lasting disability from PPROM @ 23 weeks is slight hearing loss in his right ear. Contrary to what you seem to believe, it would not be a mercy if he had died. Next time you’re in the situation, think about my son. His name is Holden, and he is alive and thriving.
realityrounds said
Lauren,
You took this post the wrong way. I have always fought for the survival and health of the babies I care for. Always. You have no idea how happy it makes me that your son is healthy and thriving! But you must realize, those of us who work in the NICU have seen a lot of devastation that families have gone through. It breaks our hearts. The story I profiled is fictional, based on a combination of very seriously ill, very premature infants I have cared for. One’s that do very poorly early on. I care very much for the infant’s and families I work with, maybe too much. If I did not care, I would go home and not think twice about these babies and families again.
MomTFH said
She didn’t say it would be mercy if your son died. She said it was mercy when a hopeless case dies. One that could have died in the arms of its parents instead of in a sterile container with tubes in every existing hole and a few new ones.
It gives me chills that you would treat someone who saves babies like your son every day like this.
Lauren said
She’s the one who wrote the article! It is impossible to know if a child is “hopeless” or not in the first few minutes after birth (unless of course there’s an obvious deformity incompatible with life). My son was born gray and listless. His initial APGAR was 2. Things did not look good for him. Since RR responded at another location, I’m not going to continue to post here. I just think it is important for her, and all the rest of the readers, to know how the conversation sounds to a parent who has been there.
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