A Heart Mom Speaks

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

By Karen Thurston Chavez

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.

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7 Responses to “A Heart Mom Speaks”

  1. jtousey Says:

    Steve,
    Thank you so much for sharing this email. We lived about 30 minutes away from Duke when our daughter was diagnosed with HLHS. My OB caught the initial abnormality and we were in a Duke perinatal clinic the following morning. When they saw the defect more clearly, they immediately sent us over to a Duke pediatric cardiologist who works in Raleigh, where we lived. We had a 24-hour turn-around time from a standard 18-week ultrasound at the OB to an in-depth fetal echo. And then we had another echo two weeks later.

    I could go on and on about the level of care our daughter received at Duke, and that she continued to receive once we were discharged. We recently moved to Maryland, but we are keeping our daughter under the care of her peds cardiologist in Raleigh, and we plan to have her at Duke for her Fontan sometime next year.

    Anyway, I guess the point of all of this is that I never fully appreciated our proximity to not one, but two excellent hospitals that do treat CHDs often and well. And it is an absolute shame that babies could still die from common and treatable CHDs because of circumstances like the one your reader shared. An absolute shame.

  2. Heart Mama Moment « re{de}fining Says:

    […] https://tricuspid.wordpress.com/2010/05/03/a-heart-mom-speaks/ Blogroll […]

  3. Erin Ayscue Says:

    This email just tears me up. NO child should have to die due to someone else’s arrogance and incompetency. Our daughter, too, was born at Duke where I was a patient in the perinatal clinic due to my age and diabetes. However, Caylen’s CHD’s went undiagnosed until her birth, despite numberous ultrasounds and two fetal echos, including one by her future cardiologist. I don’t blame them, they just weren’t easy to see.

    Our daughter received excellent care at Duke. Even though she was only given hours to live and complete confusion over her defects (two of her major ones are VERY rare), the doctors never gave up on her or quit trying to figure things out. When it came time for her open heart surgery (which turned into two within two weeks), her doctors searched hard for one who still remebered how to do her surgery (it hadn’t been used in many years). This is top-notch care. We now live in Mississippi. Her doctor here consults with Duke and Michigan as needed. We’ve been told that her future cath ablations and surgeries can be done here or elsewhere, wherever we are most comfortable. This is top-notch care.

    It wasn’t until we got involved in the CHD community, through speading awareness and advocacy, that we discovered our experience was not the norm in many, many cases. Too many children are dying due to money or lack thereof, incompetancy, arrogance, egos and the unwillingness or inability to share information in a timely manner or at all. I don’t know what it’s going to take to change this, but I, for one, am willing to help in any way I can. I just wish I knew what to do sometimes. We are trying to help on a local level. Our peds cardiology department is working to grow and provide better care and service. They are allowing our local Mended Little Hearts group to help in this.

    Steve, thanks for sharing this email and helping to spread the word that not all families are as blessed as ours. Maybe together we all change this.

  4. Dave Says:

    I have CHD and I’m on the transplant list at Mayo Clinic in Rochester, MN.

    I don’t think any doctor would let their ego get in the way of referring a patient. Medical care is not 100% correct all the time. Cars break, computers break, oil rigs blow up. The fact is we live in an imperfect world and everything has a possibility of turning out wrong.

    • Steve Says:

      Doctors are human too, Dave, and subject to the same faults as every other human in the world. I made a similar argument to Mrs. Chavez, but she contends that similar things have happened in the past.

      Personally, I was brought into the Emergency Department once with a one – time allergic reaction that had caused my tongue to swell and made it difficult to talk or breathe. The doctor (Who was leaning against the wall eating an apple the entire time) “diagnosed” me as drunk and told me I could wait until he finished his lunch. My folks threw me back into the car and we went to another hospital.

  5. Mary Ellen Mannix Says:

    Hi,

    My son who diagnosed prenatally with coaractation of the aorta (a common and highly treatable CHD) died at 11 days – not from anything he was born with (as every clinician who reviewed the records attests to) but from preventable medical errors.

    The goal for every patient, child, parents AND clinician is for outcomes like Dave’s. To achieve such a positive putcome we all need to be reaslistic – including patient’s like Dave. Though medicine remains imperfect, consumers cannot contiue to put the medical industry on a marble pedestal. Glorifying the industry as saviors only serves to put more unrealistic pressure on the clinicians which then inhinits their ability to work transparently.

    The example of the child who died from an untreated – yet diagnosed – CHD which was not communicated to th eparent is wrong on every count.

    I know a case of a child whise only hope was a heart transplant. And the child (let’s call him Joe)was a classic excellent candidate for a transplant. HOWEVER- according to the pediatric cardiologist on Joe’s care team, as a group the clinicians felt the family was “too unorganized to handle the demands of the post-transplant medical regimen”. As such, the clinicians advised the family there were no further treatment options. Joedied about 6 weeks later. The heart that had become available went to another patient – who was not as strong a transplant candidate as there were multiple competing health conditions/disorders. That patient – and the heart – died within a week of it being denied to Joe.

    My son died after open heart surgery and deep hypothermic circulatory arrest to correct his coarct. I was never told they would be doing that. The consent form we signed said, “repair of coarct”. We were never told of the treatment options or that James’s care could wait. They took him and did whatever they wanted without consulting us (his mom and dad) – even though we were always at the hospital.

    Parents and caregivers must be given all options for care. If the parent then asks of theclinician, “What would you do?” Then is when you share your personal opinion. Parents need information. The only way we can possibly hope to partner in care as the medical staff always insists – is if we are given access to the same info they have.

    james’s (STB) Project is a 100% volunteer driven project to build a pediatric patient safety coalition. Please sign up for membership (free) and help connect parents and clinicians on this vitally important issue.

    and thank you, Steve, for sharing this information.

  6. Karen Thurston Chavez Says:

    Steve,

    Thank you.

    The University of Florida Congenital Heart Center is anywhere from a 1-hour to 3-1/2-hour (or longer) drive for Big Bend heart families, but w gladly, thankfully, gratefully drive there as often as necessary for our children. For most of us, UF-CHC is our home away from home.

    UF-CHC has incredibly gifted and dedicated pediatric cardiac physicians who care deeply about their patients’ lives and well-being. No, they are not perfect. Yes, they make mistakes — *isolated* incidents of error.

    UF-CHC does *not* have a repetitious pattern of errors in diagnosis and treatment in their pediatric heart patients. And UF-CHC knows when it should refer heart patients to an even larger facility to handle specific cases and it does when necessary. That’s what good medicine and good patient care is about.

    There’s no reason why ALL of our Big Bend area heart children (or suspected heart children) shouldn’t be automatically referred to UF-CHC, where they can be screened, diagnosed and treated appropriately. Tallahassee simply isn’t set up to do it and do it *consistently* right. Our children deserve no less.

    Karen

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