Can we please discuss this like adults?

I recently read an article in the journal Pediatrics entitled “Infant with Trisomy 18 and Hypoplastic Left Heart Syndrome.” It was about the decision-making process regarding how to treat a newborn with a complicated heart condition in addition to an incurable, genetic, life-limiting condition. The majority of children with Trisomy 18 die within the first year though some live longer, always with severe limitations cognitively and developmentally.

Hypoplastic left heart is a complex cardiac condition requiring multiple surgeries for repair. The survival rate five years after surgery is approximately 65%. Clearly having both Trisomy 18 and Hypoplastic Left Heart Syndrome presents a very complex set of questions and decisions for the parents and the doctors.

Should the baby have heart surgery? Is heart surgery futile in this instance? Would the baby be better off with comfort care rather than invasive procedures not likely to significantly prolong life? Are there mitigating circumstances which make this baby more or less likely to have a positive outcome? Who decides? The parents? The surgeon? The cardiologist? The neonatologist? The geneticist? The hospital ethics committee? The insurance company? Where do the hundreds of thousands of dollars (or more) for complex surgery and weeks or months of ICU care come from? These are the kind of discussions which take place when a baby has a serious condition with a limited life expectancy.

Reading this article reminded me how ridiculously simplistic our public debate often is about issues like this. When people throw around words like “infanticide” or “execute,” they are poisoning important conversations, either purposefully or because they don’t understand how these things actually work.

When a baby has a condition incompatible with long-term survival, keeping him comfortable while allowing him to die naturally is very different from “executing” someone. And people who engage in infanticide are prosecuted for murder. It is not something that is done or that people are in favor of. Reasonable people can disagree on the best way to handle these issues. But we need to make sure we are discussing the same thing and basing our discussions on facts, not misleading innuendo or outright falsehoods.

The baby in this case did undergo heart surgery and subsequently died at 14 weeks of age, clearly a difficult situation for all involved. I propose the most important first step in discussing these situations is to acknowledge how complex they can be and to provide a healthy dose of compassion for the parents and others involved in these difficult decisions.

Copperheads and Fear

I was recently using the weed eater to trim up some things around our house when I suddenly saw a small snake slithering under the swirling line. Almost as suddenly, I realized it was a copperhead and simultaneous to this realization, the line caught the snake and slung it back towards me. I frantically tried to see if it was on me somewhere, right at my feet, etc. Eventually I found the lifeless front half of it on the ground about ten feet away.

As I continued working, I began thinking about this more. It all happened so fast. Had I killed it intentionally or did I accidentally snag it with the weed eater? If I had seen him lying in the middle of the trail while out hiking or in the middle of the road and been able to observe from a distance, I would have just waited until he left, or maybe tossed some sticks at him to make him leave so I could pass. This is a different calculation, however, right next to my house where my granddaughter may be toddling around in the grass not too many months from now.

If it had been a black snake or garter snake (which are not poisonous), I think my reflexive reaction would have been to move the weed eater away from him to make sure I didn’t hit him. I have recently escorted non-venomous snakes off a road and away from a sidewalk to make sure they weren’t harmed.

I think the answer to my question is that my unconscious brain decided to kill it before my conscious brain had time to make a decision. We know that much of what we do is determined by our unconscious brain before our conscious brain has time to intervene. Much of what we do consciously is simply developing rationales for what our unconscious brain has already done, even when we think we are making conscious decisions.

So why would I have reacted differently to a black snake? Over the years, my conscious brain has trained my unconscious to not fear black snakes because they are not dangerous. When I see a black snake I often just stand and watch until it slithers off somewhere. Often this means five or ten minutes of just observing it. And over time my unconscious brain has gotten the message that a snake that looks like that (in the United States) is not a reason to fear.

This same process in our brains occurs with other things. How do you get over a visceral fear of a place, a situation, or an object? You place yourself in the feared placed, by the feared object, in the feared situation and eventually recognize that it did not harm you. How do you make that fear worse? You avoid the situation, object, or place and continue to think how scary it is, thereby fortifying the corresponding fear pathways in your brain.

This applies to people as well. Are there certain people you fear based on their appearance, the way they talk, what they wear, or your assumptions about the way they act based on their politics? The best way to get over that fear is to get to know them. The best way to enhance your fear is to avoid them and keep telling yourself why you should fear them.

How do we help our children not develop fear of others who are different? We have them interact with folks from different races, ethnic groups, cultures, religions, etc. so they can learn that people are just people.

Sometimes it is rational to be afraid of certain people in certain situations. But I think much of the rampant fear and anxiety in our society is misplaced. In some cases, it is detrimental to our children. And when we make decisions based on misplaced fear, we are unlikely to choose wisely.

 

Just watch this while I...

More and more often when I walk into an exam room I find a child or children watching something on a phone or tablet. It is not unusual for them to be completely oblivious to what is going on around them and to get upset when asked to put it away. Sometimes children almost look like they are in a trance as they stare at a device. This makes me wonder about what effect these devices may be having on children’s development and behavior.

The evidence suggests that children younger than two generally do not learn from watching something on a screen because they are developmentally unable to transfer what is happening on the screen into their three dimensional reality. Children aged 3-5 may benefit from limited use of well-designed TV shows such as Sesame Street and this effect is enhanced if the child and parent watch together and discuss what they are watching. However, many shows and apps which claim to be educational have not been developed in a way which is supported by research and what is known about child development.

Skills which are important for later school success such as persistence, impulse control, emotional regulation, and creative thinking are learned best through unstructured and social play and interactions between a child and parent. So it is much better to get down on the floor and build something with your child out of blocks than watch a video about building something.

Increased use of digital media increases the risk of obesity and the use of media in the evening, especially in a child’s bedroom, decreases the amount of sleep obtained. The data suggests that excessive watching of television in early childhood can lead to delays in a child’s cognitive, language and emotional development. The effects are worse for younger children, more hours watched, and watching things other than PBS (an interesting finding).

When parents spend a lot of time on their phones or watching TV, this decreases the amount of interaction they have with their children which also can have adverse effects on the child.

As tempting as it can be to let the TV, phone, or tablet keep your child occupied, remember that they need to learn to live in the real world, not a virtual world. So play with them, talk to them, and turn them loose to play and explore on their own (in a safe environment). This will help them develop the skills they need in the real world.

 

Reference: https://pediatrics.aappublications.org/content/138/5/e20162591

 

What Makes a Person Worth Something?

I have been thinking about the underlying assumptions that led to the college admission scandals that have recently come to light. I am not up on all the details but basically it sounds as if folks were paying bribes to get their children into schools into which they would not have otherwise been accepted. I read an article about a young woman who was recruited to be on one of the top women’s college soccer teams in the country despite never having played soccer before. They never put her in a game but being recruited for the soccer team was apparently her ticket into the school.

There are a lot of issues involved. One is that the students whose families bribed their way into these schools made fewer spaces available for deserving students. Another is access to college in general as prices have soared. Even without having to compete with bribery, college feels out of reach for many families due to the expense. And there are also discrepancies in opportunity for college preparation based on school systems, etc.

And I wonder why admission to an “elite” school is so valued? Certainly some schools are generally better than others. And each school has its strengths and weaknesses. But there are a lot of places one can get a good education. Among other strengths, my undergraduate alma mater, Eastern Mennonite University, is incredibly successful at getting premed students prepared for and accepted into medical school. But no one is bribing their way into being admitted there.

But the part I find most disturbing is the message this sends to the student whose parents bribed her way into school. Essentially, the parents are saying “Who you are is not good enough for what we want you to be.” What must that do to the person being “helped?” Imagine the effect of having your parents pay a large sum of money to make you “good enough.” Are her parents going to bribe her way through the rest of life as well? It sounds like a perfect set-up for a lifetime of frustration, trying to be something she is not, always having to prove her worth.

One’s worth is not based on what college one attended or whether one went to college at all. When one of our children did not get accepted into their first choice university, there was some disappointment. But the other response was “It’s probably good. I’m not sure I could have kept up there anyway.” I thought this was an extremely wise and self-aware statement for an adolescent to make.

I have nothing against “elite” schools. I know lots of folks who have gone to them who are kind, generous, smart, and hard-working. But I also know folks who are all of those things who went to state schools, small liberal arts colleges, community college, trade school, and no college at all. We are all different with different strengths and weaknesses and it takes all types to make society work.

Encourage your children to pursue their strengths and interests. And always remind them of their inherent value as a person; not because they are the best, smartest, prettiest or whatever, but because they are who they are.

Please don't "bring back our childhood diseases"

In response to the current outbreak of measles in Washington, the spouse of a prominent U.S. government official recently tweeted this:

“Bring back our #ChildhoodDiseases they keep you healthy and fight cancer”

Here are some reasons I think that is a really bad idea:

·         Measles causes death in 1 to 3 of every 1000 reported cases in the United States and acute encephalitis, which often causes permanent brain damage, occurs in approximately one out of a thousand cases. It is one of the most contagious of all infectious diseases.

·         Rubella (German measles) during pregnancy can result in miscarriage, fetal death, or a host of birth defects involving the eyes, heart, ears, and brain.

·         Polio can cause an acute paralysis in childhood at the time of infection which can lead to respiratory failure and 25-40% of persons who had polio as a child develop a slow, irreversible muscle weakness decades after the original infection.

·         Diphtheria is fatal in 5-10% of cases, often by causing strangulation by the swelling and obstruction of one’s airway.

·         Pertussis (whooping cough) causes a severe cough that can last 10 weeks or more and two thirds of infants with Pertussis are hospitalized. One in one hundred infants younger than two months of age with Pertussis die. Other complications include seizures, fainting, broken ribs (from coughing so hard), and pneumonia.

·         Haemophilus influenzae (not “the flu”) causes a variety of infections including pneumonia, meningitis, bloodstream infections, epiglottitis (an infection of the upper airway which can cause swelling which obstructs the windpipe), infected joints, skin infections, etc. Prior to introduction of the Hib vaccine, this was the most common cause of bacterial meningitis in children. Since introduction of the vaccine, H. Flu infections have decreased by 99%.

·         Pneumococcus causes a variety of different serious infections in children including severe pneumonia, bloodstream infections, and meningitis. Serious infections with pneumococcus have decreased by 76% in the U.S. since the introduction of the vaccine.

·         Rotavirus causes vomiting, diarrhea and fever which can last for up to seven days. Since introduction of the vaccine, hospitalizations for Rotavirus in the U.S. have decreased by 75% (40,000 to 50,000 fewer children hospitalized each year).

And childhood diseases do not "keep you healthy and fight cancer" either.

Data source: AAP, Report of the Committee on Infectious Diseases, 31^st Edition

The Baby I Can't Forget

I process my thoughts by writing. I wrote this years ago and was reminded of it now because of some of the recent public discussions regarding the beginning of life. I am reminded that real issues in life rarely fit into a campaign slogan or on a bumper sticker.

I think about him sometimes even though it has been more than twenty years and I only spent about twenty minutes with him.  I do not know his name or even know if he was male or female.  But I refuse to call a baby "It" and have arbitrarily elected to use masculine pronouns.

I was the resident on call in the Pediatric Intensive Care Unit (PICU).  A friend and fellow resident was on call in the Neonatal Intensive Care Unit (NICU) right next door.  At some point during the day, our paths crossed and she told me that there was a woman in Labor & Delivery, one floor up, who might deliver a premature baby that night.  Her dates were unclear but they thought she was somewhere between 22 and 25 weeks gestation.  She asked if I would go to the delivery with her if it happened, and I readily agreed.  Although I had no responsibility to be there, our group of residents often helped each other in stressful situations.  When you are scared to death and in over your head, it is nice to have company, even if your company is likewise frightened and inexperienced.  I assumed it would probably not happen that night and went back to caring for my unit full of kids with diabetic ketoacidosis, babies recovering from heart surgery, and victims of motor vehicle accidents and child abuse.

Sometime in the wee hours of the morning I was stat-paged to Labor & Delivery.  I ran into the delivery room and found my friend at the head of an infant warmer on which laid a tiny person.  He was just over or just under one pound, I can't recall exactly.  His heart was beating, albeit a bit slowly, and he was making some minimal, gasping attempts at breathing.  He was not completely blue but headed that way.  Three weeks may not sound like a big difference but, at that time, 22 weekers had no chance of survival and 25 weekers had a small, but real, chance of being basically normal children.  In between 22 and 25 weeks, and in between dead and normal, was every gradation of disability and relative risk that one could imagine.  We were not experienced enough to know where he was on that continuum.  He was obviously alive and trying to stay that way so we decided to proceed.

The first step was to establish an adequate airway and help him breathe by inserting a plastic tube into his windpipe so we could pump oxygen directly into his lungs.  As I was preparing to do this, the attending obstetrician, who I had not noticed beside me, quietly told me that the mother wanted "no heroic measures."  Physicians, ethicists, and clergymen could discuss this for days without reaching a consensus on what constituted heroic measures in this case.  Clearly, without intubation the baby was going to die soon.  We needed to decide something in seconds, maybe a minute if we were lucky.  Providing adequate ventilation seemed like a pretty basic step given the circumstances and choosing not to would have been an irreversible decision.  I also doubted my ability to intubate someone so small.  If I tried and could not do it, the question would answer itself.

I took the laryngoscope in my left hand and a 2.5 endotracheal tube in my right.  I gently pulled the baby's tongue and epiglottis forward to expose the vocal cords and slipped the tube through them.  I was surprised that it worked and when we started bagging oxygen into his lungs his heart rate and color improved.  Things were looking up.  This tiny person was alive!  Suddenly, I heard wailing and turned to see the baby's distraught mother being wheeled out of the room in her hospital bed.  The OB resident pushing the bed was scowling at me.  That was the first time that I realized that my actions were “heroic.”  Meanwhile, my friend and colleague was on the phone with the neonatologist.  He was on his way and wanted us to do our best to keep the baby alive until he arrived.  So with a mixture of triumph, confusion, and anger, I helped transport the baby down to the NICU.  The neonatologist was there and I was now superfluous so I slinked back to the PICU where I could review ventilator settings in peace.

It was only recently that I started to wonder why we were even called to the delivery.  Was the expectation that we would show up, do nothing, and watch the baby die?  If so, it seems like a terrible intrusion into a private and painful moment of a woman we did not even know.  And obviously our intervention was even more unwelcome.  Would it have not been better to not call us to come?

I went about my work in the PICU, checking on patients before the rest of the PICU residents and attending arrived, presenting the patients on morning rounds, and trying to get my paperwork done in hopes of heading home by mid-afternoon.  Sometime during the day, I heard that the baby in the NICU had died.  I was numb and confused and did not know whether this development was good or bad.

I wonder about his mother.  If I still think about the events of that night, she must be haunted by it.  I would like to talk to her but I do not even know her name or where she is from.  And what would I say?  "I'm sorry that I tried to save your baby"?  I hope she is not mad at me.  I hope she knows that I did what I thought was best.  But I really wonder about him.  Did he feel distress when he was gasping to breathe?  Did he feel discomfort when I intubated him?  If he could have told me, what would he have asked me to do or not to do?

If I could do it all over again and knowing what I know after more than twenty years in practice, I would wrap him up in some blankets, hand him to his mother, and express to her my sorrow at her loss.  Years later, a wise friend of mine asked me in relation to another event, "Did you do the best you could with the information you had available at the time?"  My answer would be an emphatic "Yes!"  I think that is all anyone can expect of any of us.

Raising Emotionally Secure Children

I recently became a grandfather for the first time which has made me think more again about what is involved in helping children to grow up to be healthy and well-adjusted. Watching my son and daughter-in-law with the baby with grandparents chipping in is a great reminder for me how time consuming it is to do all of the things necessary to care for a newborn.

She clearly has physical needs – being fed, changed, clothed, warm, etc. But she also needs people to hold her, talk to her, and love her. I do not think the importance of those emotional needs can be over-emphasized.

I am not a child psychologist but I think it is pretty clear that children who miss that connection when young often have holes in their emotional development which are difficult or impossible to go back and fill later. My guess would be that folks who foster or adopt children whose early childhood experiences were difficult would concur.

There is something that happens in the first years of life that is integral to a child’s development. Children who are abused, neglected, separated from their family, or have unstable home situations have an additional layer (or layers) of obstacles to developing normally.

Sometimes they can overcome these disadvantages but it is difficult. It’s like a race in which different children get to start at different places. The children who miss out on those early childhood experiences start somewhere behind the rest of the group, sometimes way behind. Maybe a few who are naturally very fast and/or have an exceptional coach can catch up. But all else being equal, they likely never will completely.

So hug your children, talk to them, read to them, crawl around on the floor with them. Make sure they know they have a safe, secure place at home. And if you struggle to do that, don’t be afraid to ask for help. Raising children is hard and there is no shame in admitting that. Everyone who has ever been through it will understand.