Eliza Grace was born on March 15, 2006, at 26 weeks, 4 days, weighing 1 pound 4 ounces and measuring just 11.5 inches long. She is the light of my soul and this is the story of our life in the big city.

Thursday, May 24, 2012

One Size Does Not Fit All

That's the message of RBaby Foundation when it comes to Emergency Departments.

I had never heard of RBaby until a friend posted a link to this Petition on Facebook.  The purpose of the Petition is to improve Pediatric Emergency Care and to insure that EDs are capable of treating pediatric patients.  The story behind RBaby is heartbreaking and I am in awe of the strength of the parents who founded the organization.

If you've ever had to take your child to the ED and didn't have the luxury of a children's hospital (because with so few pediatric hospitals in the US, it truly is luxury) you might have realized early on that the parade of residents and attendings were often winging it when it came to diagnosing and treating your child.  Or, if you are not a frequent flyer in the pediatric medical world, you may have thought that surely this large hospital to which you had taken your child actually had ED doctors who had actual experience in diagnosing and treating children.  Sadly these beliefs may have been wrong.

When Eliza was discharged from the NICU one of the nurse practitioners told me in no uncertain terms that if I needed to take Eliza to the ED, there were certain hospitals I should take her to and ones I should not take her to.  She didn't say this because they "bad" hospitals, in fact they were very, very good, but because they did not have ED staff dedicated pediatrics.

Having spent some quality time in pediatric EDs I have also found that the quality of care depends upon which doctor is assigned to your child.  When Eliza has headed to the ER the first thing that the triage nurse asks if she has any medical issues or significant medical history.  My stock answer begins with "Eliza was born at 26 weeks, weighed a pound, was on a ventilator for 67 days and was in the NICU for 100 days."  I fill in more details, but these basic facts are the first listed on her chart.

During one ED trip, the resident came to see Eliza and asked me "I see your daughter was in the NICU, why was she there?"  So I look at him and say "she was born at 26 weeks, weighed a pound, was on a ventilator for 67 days and was in the NICU for 100 days," even though I know this is right in front of him.  His next question was "yes I see all of this but why was she in the NICU?"  So I rattle off the more detailed reasons for the NICU stay (RDS, BPD, NEC, sepsis to name a few) but he asks me the same thing again and even tells me that I am not answering his question.  Now I must say I did think this was a trick question, so I cautiously offered up that when a child has little to no lung function at birth and weighs a pound they tend to be in the NICU for a while.  When he asked it the third time, I asked to see another doctor, one who actually might know something about pediatrics, prematurity and what the hell a NICU is.  He was quite obstinate and not too pleased that I walked over to the desk and demanded to see an attending.  Luckily the attending seemed to grasp why Eliza was in the NICU and our visit proceeded smoothly (except for the constant stink-eye I got from the dimwitted resident).  Some residents are great, this one, not so much.

During another hospital visit another resident wanted to place an IV in Eliza.  I asked how often he had done this to a 14 pound one year old infant.  He insisted he had placed IVs in "dozens and dozens" of children.  I asked how many times he had put IVs in infants.  He repeated himself (maybe he was related to the resident from the prior visit) and I asked again how many infants.  Finally he admitted that Eliza would be his first infant and I must say, he did seem pretty enthusiastic at the chance.  I declined his offer and demanded that a pediatric nurse with infant experience, the IV team or a NICU nurse come down to place the IV.  A very nice NICU nurse did the honors and had the IV placed on the first try.  This also resulted in resident stink-eye.

On yet another occasion when Eliza was severely dehydrated, and the pediatric ED was a bit crowded, the resident asked if I was comfortable giving Eliza 5 mls of pedialyte by mouth since he didn't think he could get an IV in her and there would be a long wait for someone who could.  I give this one some points for honesty.  But really, you are going to advertise yourself as a pediatric ED with this level of inexperience and tell a parent to wing it with pedialyte for a couple of hours until they can get to you?

My point is that, as a parent, not only do you need to arm yourself with knowledge of which ED to take your child to (assuming you have this luxury of choice), but also put aside any concern about asking questions or offending a doctor by questioning his choices, asking if he's ever done a procedure before (no matter how innocuous looking) and asking for another doctor if your gut tells you the one in front of you is clueless about your child' symptoms or the appropriate treatment.

So now go sign the RBaby Petition.


Jo said...

I just spent almost a week at the hospital with my mom (surgery) and it is just so crucial that every patient have someone to advocate for them. It absolutely makes a difference in the quality of care the patient receives.

Anne - you have done an amazing job as an advocate for Eliza. Thank goodness you aren't afraid to ruffle some feathers:-)

BTW, we are discovering that the medical records for patients are sometimes unbelievably horribly WRONG. We looked over my mom's discharge report...there were things that were inaccurate and some things were just plain wrong. If these are the reports doctors are reading as medical history, it's no wonder they are confused!

Barb said...

I read this yesterday and it turned out to be almost prophetic. I took my daughter in to her pediatrician for cough that turned out to be pnuemonia today and as we were discussing her care during a recent ear infection, he laughed about the dosing they had given her for her antibiotic before saying "Obviously someone who isn't used to treating children." And the medical student that was working with the pediatrician obviously had a lot to learn about children too, so I'm guessing it was good he was there. But I was reminded of this post and how children are not just little versions of adults. Your stories of ED care are particularly frustrating. How is it possible that this is so often overlooked? Crazy.

Anne, Eliza Grace's mom said...

The situation with pediatric care in the ED is a little reminiscent of how women are often treated in the ED when it comes to heart attacks. Since the symptoms of a heart attack in women don't always mimic the symptoms that men have, women were/are often dismissed and sent home. I think that has started to change in recent years.

I volunteer with Project DOCC at Mt. Sinai here in NYC. The pediatric residents have to do a parent interview and home visit with the parent teachers so they can gain a better understanding of what it is like to care for a child with a chronic illness. Some of the things I tell the residents is that they need to listen to the parents (who know far more than they are given credit), to not treat children like miniature adults and to be honest with parents about what they (the residents) know and don't know. Most of Eliza's doctors are at teaching hospitals so even on routine visits there is often the parade of residents. I have had more than my fair share make inane suggestions about medications and treatments for Eliza which were clearly made without (a) reading her history or (b) listening to what I told them. It is very, very frustrating. For parents though who have not been frequent fliers in the medical world and don't have a sense of what may or may not be appropriate, it can be more than just frustrating, it can be dangerous.

I also think some of the younger residents have watched way too many episodes of Grey's Anatomy and have come to believe that a few years of medical school enables them to perform everything from brain surgery to heart surgery on an infant simply because they finished medical school.

Laraf123 said...

I applaud your assertiveness in the face of these doctors' over-confident and possibly dangerous behavior. It's hard to stand up to medical authority even under the calmest cirecumstances. I can't get over the guy who asked 3 times about the NICU. What part of born at 26 weeks did he not understand. Maybe you should have spoken much slower. Oh, and the Pedialyte by mouth doc? Yes, honest; yes, good; but I agree that if you have to treat your own daughter in the pediatric ED maybe it is pediatric after all. The one thing that stands out is the time you asked for a NICU nurse to come down and put a line in. I would have never thought of that--you are one smart mommy!