The wrong question

The question we should be asking isn’t “Is it right to consolidate centers that offer Congenital Heart Defect (CHD) surgery in favor of larger centers?” but rather, “How do we get a CHD patient that presents at a non-surgical facility to one of the large surgical centers?” This question really has no good answers.

At 11:21 PM last night, a mother delivered a child at a smaller facility that does not offer Congenital Heart Surgery. The child, a five-pound, six-ounce boy, appeared to be showing the signs of Cyanosis. There has been no indication of any potential for cardiac problems noted in the medical records, and the child was immediately evaluated by the Cardiologist on staff.

The Cardiologist noted the presence of several unusual heart sounds, which along with the Cyanosis, lead him to believe that the child may very well have a Congenital Heart Defect. However, he is not sure of the exact diagnosis. For further testing the child needs to go to a facility with advanced imaging equipment, and there are two hospitals that can provide this service: Hospitals A and B. Hospital A has imaging equipment but no Congenital Heart surgeons; Hospital B (304 miles away) has both. The Cardiologist chooses Hospital B – perhaps the easiest decision that will be made all night.

Meanwhile, the parents have been informed that there may be a health issue with their child, and they may need to travel to a larger facility. In a small room with a Hospital Counselor, they discuss their options, which at the moment are largely unknown. In a few moments the Cardiologist enters the room and states that their child may have a serious heart problem but he is not sure. He recommends the child be taken immediately to Hospital B and possible surgery.

Now our questions multiply: Is the infant stable enough to fly? If yes, is the weather suitable for helicopter transport? Is a helicopter available? What kind of medical skills will be needed for the journey? Does the hospital have someone who is qualified to provide that level of care? If not, can someone be found quickly?

Is the mother able to travel? If not, how will the mother travel to Hospital B when she is well enough to travel?

These are the medical questions that need to be answered. Non medical questions could include anything from how will the family arrange for their clothing to be delivered to them at Hospital B, where will they stay, do they require any financial assistance, and what will happen to their vehicle? After all, when they arrived at this hospital, they never expected anything but the miracle of childbirth. Now they have been thrown into a world they do not want to visit, but have been informed that this will be their permanent home.

At 2:13 AM the phone rings in an office of Hospital B. The person who answers the phone knows that the Cardiologist on Call has been discussing a case with a fellow doctor at a small facility and that the child in question is being transported by helicopter. The phone call informs him that the helicopter about fifteen minutes from landing.

In turn, this person calls the Catherization Lab, Hospital Social Services, and Cardiology to relay the news. With great reluctance he calls the number of a home near Hospital B. Apologizing again for waking the family, he tells the woman who answers the phone that the helicopter is near.

The woman represents the local Congenital Heart Defect support group and is a Heart Mom herself, and has volunteered to work with new parents and try to guide them through their first journey into the CHD world. Just before leaving the house she looks into the room where her young daughter sleeps, her personal reminder of why she answers the phone in the middle of the night.

Obviously, this story is fiction – or it may not be, as 1 out of every 125 children are born with a Congenital Heart Defect. Many of them are born at smaller facilities that offer little to no Open Heart Surgery experience, and need to be relocated to “Hospital B” for evaluation and possible surgery. In my opinion, 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.

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5 Responses to “The wrong question”

  1. Zate Says:

    That story was us. Few minor details differ. Wasn’t that far but ultimately that was us

  2. Amanda Says:

    This story is nonfiction – after founding HRH in 2003 I’ve heard it more times than I can count. You asked some of the right questions – here is another and an important one:

    How do we improve neonatal diagnosis to mitigate the medical risks and social impact you described in your narrative? If you know BEFORE birth the life expectancy goes up and the time to prepare for both staff and family increases too. Let’s compare the cost of 125 ultrasounds at 30 weeks to the cost of a life-flight and the increased risk of death for a child who was diagnosed too late.

    Liam’s life flight (by plane) in 2003 cost more than ten thousand dollars – we all know what medical inflation has meant. CHD is the #1 birth defect why don’t we do a better job screening for it? Sure some will always be missed, but fewer missed makes this story you told less common.

    Also I think smaller centers provide and invaluable service for the less severe cases of CHD and for local maintenance for more severe cases that have gotten past the immediate necessity for surgery – closing those centers isn’t the answer, but redefining their role in CHD care is important. Some centers should NEVER EVER EVER attempt a Norwood or DKS or sometimes even a BT shunt. For the less invasive and more routine procedures they do serve a purpose.

    Better a kid 3 or more years post-op from Fontan gets local follow up at a small clinic and be redirected to a large center if intervention is imminent than discontinue supervision and go into CHF.

  3. Rhonda Lyle Says:

    This story was my reality. Zeb was lifeflighted in severe heart failure to a hospital 4 hours away from us. We were not prepared. Then he was again in heart failure and had to be send via ambulance because all the flights were grounded 4 wks later. This was a nightmare but we were awake!!

    Thanks Steve, and thanks for all you do! Zbug loved the coin..

    Rhonda 🙂

  4. Suzanne Says:

    This too was us but we were sent to Hospital A where there was no cardiac surgeon on staff. They brought in an inexperienced surgeon from a nearby children’s hospital and there were many unnecessary complications. I thank God my daughter is alive today but wish I had known a large hospital with experienced doctors and nurses matter.


  5. Erin Says:

    We were fortunate- at one day old when our daughter’s pediatrician thought something sounded “not right” he ordered an echo, it was sent to another center to be read and in hours we had a HLHS diagnosis and the transport team arrived from our (thankfully nearby) children’s hospital, which is known for it’s success rates with HLHS kids. We met another family who’s baby had first been transferred to two other hospitals in the state (that do not have pediatric cardio surgeons) and repeatedly told their kids’ defect only needed medication- later to find out he would require surgery immediately and later a transplant. It breaks my heart that this goes undiagnosed and that baby’s don’t get to the right place for treatment.

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