Over the weekend I received an email from a Heart Mom commenting on my recent post titled The Wrong Question. With her permission I have made that email today’s entry:
When Doctors Fail
In Steve Catoe’s April 29, 2010 blog post (The Wrong Question, Adventures of a Funky Heart), he closes by saying, “… asking if closing smaller facilities in favor of larger, more experienced hospitals is the wrong question. We need to concentrate on smoothing the transition from smaller hospitals to the larger centers where help is more readily available.”
Oh, how I wish it were that simple where I live.
With a metropolitan population of about 357,000, Tallahassee, Florida, is neither huge nor small. We have a small regional hospital (not equipped for pediatric care) and a large regional hospital. The “big hospital” has a designated level II trauma center, a level III neonatal intensive care unit and a pediatric intensive care unit. It serves several surrounding counties.
It’s a good hospital — as long as you aren’t a child in need of highly specialized, high-quality care in gastroenterology, urology, neurology, oncology or cardiology.
Children with one of those conditions, or suspected to have one of those conditions, should look elsewhere in our state – Wolfson Children’s Hospital in Jacksonville, All Children’s Hospital in St. Petersburg, Arnold Palmer in Orlando/Miami, or, my personal preference, Shands Children’s Hospital at the University of Florida in Gainesville.
Unfortunately, though, Big Bend area children who need cardiac services are not always transported or even referred when they should be, to facilities and physicians more qualified to diagnose and treat their conditions. This is especially true for children with heart conditions.
In the Big Bend’s situation, the question is: What do you do when your local hospital and pediatricians don’t refer cases to a children’s hospital – when they absolutely should?
Steve offered you a fictitious scenario. I’ll tell you a real one.
Donna has a normal, uneventful delivery of an 8-pound baby boy (we’ll call him Michael) at our smaller hospital. Upon his arrival, he is in acute respiratory distress, mildly cyanotic, and has “soft markers” for Down syndrome. (It appears he may have Downs, but his traits are subtle.) The smaller hospital isn’t equipped to handle newborns with health problems, so the baby is transported to the larger hospital just a mile away. There are no beds open in the level III NICU, so the newborn is admitted into the PICU.
Michael’s oxygen saturation levels are persistently in the low 90s/high 80s, and drop to the 70s when he nurses. Because of his mild cyanosis and likelihood of Down syndrome (with Down syndrome, a baby has a 50 percent chance of having CHD), he is screened for congenital heart defects.
He has an echocardiogram at the hospital and no CHDs are noted. The baby spends 21 days in the PICU, where he continues to have respiratory distress and mild cyanosis. During his stay, Michael is diagnosed with thalassemia (a blood disorder) and his Down syndrome is confirmed. A few days before he goes home, doctors detect a heart murmur.
At 19 days old, the baby has another echocardiogram. This time, the report mentions a patent foramen ovale (PFO) and patent ductus arteriosis (PDA). Tallahassee’s one local doctor who sees pediatric heart cases – a pediatrician who served a pediatric cardiology fellowship 35 years ago and is not (and never has been) a board-certified pediatric cardiologist – tells Donna her son is fine and his heart is “blessed.” Donna said the doctor did not tell her Michael had CHD, and the baby’s discharge paperwork says nothing about following up with a doctor about the baby’s heart murmur, or about the CHDs noted in the echo report.
On day 21, the baby is discharged and Donna is instructed to keep him on oxygen, especially when he feed. He is prescribed medication for his thalassemia and will have blood drawn regularly to monitor his condition. Donna is told to follow up with her regular pediatrician. For the next 19 days, she does everything she’s been told to do.
When Michael was only 40 days old, he dies suddenly and unexpectedly at home. The autopsy report shows the baby died from complications caused by congenital heart disease. The medical examiner found 1) anomalous origin of the left coronary artery, 2) ventricular septal defect, 3) atrial septal defect, and the 4) PFO and 5) PDA.
Five heart defects, only two of which were discovered by ultrasound. None of which Michael’s mother was told about. None she was aware of until she read her son’s autopsy report.
Yes, health-care professionals make mistakes. But this baby had multiple EKGs and two echocardiograms. He had a heart murmur, suffered persistent respiratory distress, low oxygen saturation, and cyanosis that ranged from mild to moderate. Down syndrome increased his likelihood of having CHD to 50 percent. While the anomalous left coronary artery would have been very difficult to diagnose through echocardiogram, how did they miss the VSD and ASD – two of the most common heart defects?
I’m a parent with only five years experience mothering a child with CHD and even I recognize those symptoms as ones that should be investigated very thoroughly. Yet even with all those indicators, no one referred Michael or even suggested to Donna that Michael be transferred to a children’s hospital that offered extensive, highly specialized pediatric cardiology services. Our closest children’s hospital is only a two-hour drive by ambulance; one hour by helicopter.
Why wasn’t Michael referred? Was it because he was on Medicaid? Was it because his mother and caregivers are socio-economically disadvantaged?
Or was it because the hospital and the doctors allowed their egos to get in the way of providing the baby the best care possible? Was it because they saw no need to let someone qualified — certified — to examine the baby, or review his echos and medical records for a consultative opinion?
Michael’s CHDs were treatable. He should still be here. His mother is heartbroken.
At a children’s hospital offering pediatric cardiology services, it’s likely that Michael’s anomalous coronary artery would have been detected during a heart catheterization or other detailed heart study during which his ASD, VSD, PFO and PDA were looked at more closely.
As Steve said in his post, “The key to doing any task well is 1) do it often; and 2) do it right.” It has to be both, not one or the other. Regional children’s hospitals, like those in Florida with pediatric cardiology services, do their tasks often, and more often than not, they do it right.
Medical mistakes happen, but mistakes typically are isolated incidents. Michael is not the only child this doctor has misdiagnosed. He’s not even the only child this doctor has misdiagnosed twice. My son was misdiagnosed twice. I know at least a half-dozen other children who were misdiagnosed and/or given incorrect treatment options — most just in the last few years. If there are that many known incidents, how many misdiagnoses has no one heard about?
In Tallahassee, the question isn’t whether facilities should consolidate. It isn’t about smoothing the transition from a smaller hospital to a larger center where appropriate help can be found.
Our question is: how do we ensure every child in the Big Bend region who needs to be evaluated for congenital heart disease is sent to a qualified children’s hospital, where there is diagnostic equipment specially designed for children, and there are board-certified pediatric heart specialists who “do it often and do it right”?
I ask myself this frequently, and I pray hard for answers … before there’s another baby like Michael.