What Would You Choose?

The beginning of August, Reality Rounds (A NICU nurse) had a post that got me thinking (Posted at the bottom in red).

She did a series on it because of the response she got from the post. You can read post 1, post 2, and post 3.

Most people that commented were down right mean about it.

However, it started off with Justice for Jayden. A woman in England had her baby at a little over 21 weeks. In England, they won’t resuscitate a baby that is before 22 weeks. It isn’t considered a viable baby before then.

When this woman went into labor, they told her everything that is probably happening to her baby right then. The eyes are sealed shut, it cannot breathe on its own, it can’t suck, its skin would be peeling off. It has less than a 1% chance of survival if they had resuscitated it. Well, the baby lived 2 hours after birth and then passed.

She says he was born perfect and only needed a little help and he would be alive now.

She is blaming the country’s legislation for her child not being alive.

This woman had 5 miscarriages and then her son was born this early and passed on. I feel just awful that this happened to her. I can’t even imagine the pain she is going through.

But, I think Reality Rounds summed it up beautifully –

Nowhere in the world, including the United States( which arguably had the most advanced technologies when it comes to NICU care), is it routine to resuscitate infants below 23 weeks gestation. In the United States, guidelines for initiating resuscitation vary from 23-24 weeks, and 450 to 500 grams. These guidelines vary by state. Contrary to what Ms. Capewells web page states, it is not “government legislation” that dictates whether an infant born before 22 (really 23 weeks) will be resuscitated and admitted to the NICU. It is the physicians and staff at the delivery. If we are called to a delivery for unsure dates between 22-23 weeks, (the NICU team does not attend deliveries between 21-22 weeks) we first counsel the mom on what will happen and give her as much information as possible, regarding outcomes and survivability. Her choices are to do nothing and provide only comfort care, to start resuscitation until the baby “declares” himself, either by improving or decompensating, or request a full blown resuscitation. The physician’s at the delivery will assess the infant and it is ethically and legally appropriate to withhold or stop a resuscitation on such an extremely premature infant based on how the infant presents himself.

Infants born at 22-23 weeks gestation have a 1-10% chance of survival, with the high end requiring the most advanced NICU care possible. Of those survivors, greater than 95% will suffer profound neurodevelopmental impairment NICHD/NIH. By profound neurodevelopmental impairment, I do not mean the child will have a learning disability, or need to walk with canes, or have mild cerebral palsy. I mean the child may suffer from intractable seizures, need a feeding tube because of being unable to swallow, have varying degrees of blindness and deafness, have spastic quadraplegia and be wheelchair bound, never speak, never crawl, never walk, never run, etc.

She is an experienced NICU nurse. She has cared for every type of baby in the NICU you can even think of.

I have cared for many infants at the edge of viability. It is always emotionally draining. There is no justice to it. The extreme measures involved to keep a 22-23 week infant alive is staggering, and it is ugly. I once had a patient who had an IV placed on the side of her knee due to such poor IV access. When that IV infiltrated, I gently pulled the catheter out, and her entire skin and musculature surrounding the knee came with it, leaving the patella bone exposed. I have seen micro-preemies lose their entire ear due to scalp vein IV’s. I have watched 500 gram infants suffer from pulmonary hemorrhages, literally drowning in their own blood. I have seen their tiny bellies become severely distended and turn black before my very eyes, as their intestines necrose and die off. I have seen their fontanelles bulge and their vital signs plummet as the ventricles surrounding their brains fill with blood. I have seen their skin fall off. I have seen them become overwhelmingly septic as we pump them with high powered antibiotics that threatened to shut down their kidneys, while fighting the infection. I have seen many more extremely premature infants die painful deaths in the NICU, then live.

Ms. Capewell claims her 21 6/7 week preemie was able to “push himself over,” and was “born perfect.” An infant born this prematurely does not have the musculature to expand their chest wall in order to breathe, let alone “push” themselves over. Jayden may have been “born perfect” for a fetus, not for a viable neonate. His eyes were still fused and his skin was gelatonous. He was born too early. We do not have the technologies to save an infant as young as Jayden. Trying to save him would be an experiment in futility. An experiment on an actual human life.

When I first read this series, all I could think was that Reality Rounds was being completely selfish. It’s a baby, you should do everything in your power to save it. And then I started to think about it.

I have read stories where the parents tell the nurses to save their baby. They do everything in their power, and the baby dies hooked up to machines alone in a cold NICU. I have also read stories where the baby lives because of this.

My biggest thing with the entire situation is if my baby was going to die, I would want my baby to die peacefully in my arms. Not hooked up to machines and cared for by strangers. Not alone in a cold room.

On the other side, what if having them do all those things actually saves my baby? Even if it has impairments its entire life, I would still want my child.

But, would you want your child to go through life like that? Is that really a life?

I know I am getting into some sticky ground here, and I do appologize if I am upsetting anyone. I tried rationalizing all this with my husband last night, and we couldn’t come to an agreement on anything.

One of my best friends told me that it all needs to be between God and the parents. I completely agree. You should be able to choose to put your child on the support or not. But what is the cutoff for parents to have a say? 26 weeks? 24 weeks? 22 weeks? 20 weeks?

The youngest baby to ever be born and live was 21 weeks. The mother lied and said she was 23 weeks along so they would save the baby.

At what point do you allow women to lie for their children, especially if it leads to more problems in the future, just like Justice for Jayden? Her whole premise is that this 21 week infant was saved because the mother lied. Jayden’s mother didn’t lie, and her baby was left to die.

Where do you draw the line?

I’m sure everyone knows a story of someone that defied medicine and lived. Whether they are a 21 weeks old preemie, or someone with pancreatic cancer and it disappeared. But just because you know a story of a friend of a friend, does that make it okay for everyone?

I know I am in a sticky area. I know I would probably tell them to save my baby, even though it is against my better judgement and all that I have learned.

My husband has a friend that had a little girl born with a congenital heart defect. She lived for 7 months. They were able to have her home for a week before a fever came back. They took her to the hospital and they said they could try to save her, but it might not work. So, they took their little baby home and held her until she passed on early that morning. She was around her family.

Would you judge this family for not trying to save their baby? Would they be able to forgive themselves if they found out she would have been able to live if the doctor’s had worked on her?

There is no middle ground for this. And the ones that don’t agree and say you should save every baby, born no matter what time are always going to call you a baby killer.

Below is the original post that Reality Rounds wrote. I would also suggest reading the rest of the series that I posted at the top. It is very thought provoking.

*****

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.

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7 Responses

  1. Very good thoughts, Kayce – this is one of the greyest moral areas I've run across in a long time. It gave me a lot to think about, though I wasn't able to come to any definite conclusions.

  2. But what if the due date is wrong. What if the baby was 22 weeks? I hate due dates, this is a great example of why due dates shouldn't be written in stone. No one will ever know if that baby would have lived because he was "21 weeks gestation". This makes me very angry.toni

  3. Either way, it isn't about how old the baby is. It is about being a viable neonate. It is the doctor's call. With all that the baby doesn't have, would you want to resuscitate it?At what point do you stop saying the baby is too young? 20 weeks? Or do you let the woman have the baby and then see how it would do? If it was like that, women who are 13 weeks along would come and say they wanted their babies resuscitated. Where does it end?

  4. I had no idea what the protocols were for babies born this early. It's so hard to say unless you are the mother in that same situation. I mean it is her baby so it should be her choice right, not some doctors? The whole issue about due dates being so off now-a-days does trouble me although I know that isn't the main question. By the way, the friends you were talking about. Was that Ben and Teea?

  5. You know Ben and Teea? Did you go to school with my husband, Missy?

  6. My husband grew up in the same neighborhood/ward with Ben when they lived in AZ.

  7. What a heartbreaking thing for a mother to go through. I pray that I am never put in that situation. I could never be satisfied with making such a crucial and life altering decision. I would second guess myself for the rest of my life.Rachelle

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