I had not met her before, though I had heard the birth story. Rapidly and unexpectedly, in the wee hours of the morning, her baby, an arguably nonviable fetus, was born. There was no time for lengthy discussion, and her baby was resuscitated. At two days of age, I am going to explain to this mother that her baby has a unilateral grade IV intraventricular hemorrhage.
I spend several minutes explaining in the simplest terms what IVH is and why premature babies are at risk for it. I methodically explain the four grades of IVH which relate to severity. I carefully outline the potential complication of post hemorrhagic hydrocephalus with grade III and grade IV hemorrhages and the possible need for a VP shunt with this complication. I then cautiously explain the association of grade III and grade IV hemorrhages with profound neurodevelopmental impairment.
This mother nods understanding throughout the discussion. Her expression is one of quiet comprehension. I wonder does she really understand or is she just pretending to follow. At this point I tell her that her baby has a grade IV hemorrhage on one side of the brain. CRACK! It's as if I've been concealing a blunt object and have now delivered a powerful blow to the face. Tears followed by sobs and the shattered appearance.
I feel villainous. How could I attack this poor defenseless person with so cruel a weapon? I spend several minutes answering questions related to prognosis and expressing my condolences before I retreat to allow her time to reflect.
A partner senses my brooding and inquires about it. I tell him what I've been doing. It's almost like a confession as I describe my conversation. He tells me that whenever he has an experience like this he reminds himself that, "if the mother doesn't cry, then you haven't made your point". I still feel terrible, but gain some comfort in knowing that if I were in that situation, I would want to get the point.
Subscribe to:
Post Comments (Atom)
Posts
I am a NICU nurse and a mother. I have had many conversations with parents of extremely premature infants. There is no informed consent when it comes to resuscitation of infants on the edge of viability (22-24 weeks). Often we do not have time to council the mom who is 10cm dilated at 23 weeks gestation. Is it science fiction to begin the education of what will happen in a premature birth during prenatal visits? We often can not predict what moms will deliver prematurely. Should we then educate all moms about the possibility of preterm birth during prenatal visits? We make patients decide about Advanced Directives during hospitalization. Why do we not do the same thing for pregnant patients?
ReplyDeleteI agree that all moms should be educated about the possibility of premature birth and its complications. However, I believe it is difficult for pregnant women to imagine birth before 40 weeks. Most pregnant women feel that they will not deliver prematurely. They imagine the perfect 40 week child. I compare it to buying a car.---We buy a car, get insurance and buckle up. Yet, we can not imagine ourselves getting into an accident.
ReplyDeleteIn saying all this, I must say that education is the best prevention (in most cases) of premature birth.
Very good points, PD. I wish there was a better way to educate pregnant mothers about the possible complications of premature birth, but too often we're left with this type of situation. An important point that I failed to mention is that we always emphasize that there is no blame that lies with the mother. Often mothers feel a great deal of guilt. The best approach is to prepare the parents for what may lie ahead.
ReplyDeleteThanks again for reading.
Being the mother of a 23weeker who spent nearly 8 months being bounced from NICU to NICU in an out of the state I do wish I had known more about what to expect when having a micro-preemie. But honestly, knowing this during pregnancy would not have helped at all. No kind of education during pregnancy would have changed the course of how things unfolded. I read up on what to eat and not to eat, stayed away from caffeine, no lunch meats or hot dogs, never smoked a day in my life,....and yet it still happened. More education in the beginning of a NICU stay would have made things much much easier though.
ReplyDeleteAmazing blog Neo--thank you so much-
ReplyDeleteI'm a 'lurker' mother of a 26 weeker. He spent 108 days in the NICU and I had a similar conversation with the attending at one point. My son had a bilateral III.
I agree with AWilder, no amount of 'education' would've prevented or changed or eased in any way our time in the NICU and the months since we've been home. I had severe preeclampsia at 24 weeks, and every day in the hospital NICU reps would come talk to me about what to expect if I delivered that day. Toward the end I just asked that they not return until I actually delivered.
I actually thank God that no one left it up to my husband and me to determine how much life support to offer our son. With the prognoses he was given, we discussed it at length with each other, but were never asked in the hospital. He's the light of my soul and a beautiful happy baby. As far as we can tell, his hearing and eye sight are fine, he's got a bit of high muscle tone, but is crawling, standing and working on walking/eating on his own. He's 9 months corrected. Very different picture than the one in my mind's eye when the Doc told me of the IVH. Maybe you can share my story with a mom some day. :)
And just as a side bar...thank you for what you do. You save our babies, and you save us. I am eternally grateful and with the impact I know my son with have on this world, the 'world' will thank you some day too!
This comment has been removed by the author.
ReplyDeleteAs the mother to twin daughters born @ 23 weeks, I can tell you no amount of education could have prepared me for what I would deal with when they arrived prematurely due to a sudden infection that crossed the placenta. Of course once the shellshock of the NICU experience wore off after the first couple of weeks I was prepared to learn anything & everything I could when it came to caring for my girls.
ReplyDeleteI remember too well the phone call that explained that one of my girls had a grade IV IVH and the 60% chance of all of the things that would/could entail CP, learning disabilities, etc. Somewhere in the middle of the flood of tears that were streaming down my face & that of my husband's I suddenly realized that if those were the odds she was going to face then God had given her to the right parents---two teachers, one with a background in Special Education. I read up all I could on what might lie before us and had all of the community services set up to begin as soon as we got home. Before we were discharged from the NICU our neonatologist informed us that the follow up scans showed no signs of the IVH & both my girls are fairly healthy 4 year olds now. :)
Thank you for all that you do & for providing us with an insight as to the emotions and trials you struggle with daily. May you continue to bless others with your work & may God have a special place in heaven for the neonatologist that cared for our girls as she lost her fight with breast cancer earlier this year.