Hospital Costs and Resource Use for Children and Adolescents with Congenital Heart Defects

 

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 In a recent study titled ‘Pediatric inpatient hospital resource use for congenital heart defects,’ published in Birth Defects Research Part A, CDC researchers found that in 2009, hospitalized U.S. children and adolescents who had a congenital heart defect had more expensive hospital stays than those who were hospitalized without a congenital heart defect. The most expensive hospital stays were for infants, children, and adolescents with critical congenital heart defects. This information might help improve public health practices and healthcare planning to adequately serve people of all ages with a congenital heart defect.

We invite you to visit here to read a summary of the key findings from this paper, or here to view the article’s abstract. CDC’s National Center on Birth Defects and Developmental Disabilities is committed to identifying the causes of birth defects, finding opportunities to prevent them, and improving the health of those living with birth defects.  Please share this link with your networks.  On behalf of CDC, we thank you for your continued support and your promotion of CDC’s activities related to birth defects.

Wabi-Sabi: The beauty of our scars

Wabi-sabi

“Wabi-sabi is a beauty of things imperfect, impermanent, and incomplete.

It is the beauty of things modest and humble.

It is the beauty of things unconventional.”

–Nancy Walkup, from Japanese Aesthetics, Wabi-Sabi, and the Tea Ceremony

 

My son, Kieran, has a wabi-sabi heart. As a child with HLHS (hypoplastic left heart syndrome), his heart is covered in stitches from multiple operations. Arteries have been disconnected and rejoined, material has been added in the form of patches and shunts (you can watch a diagram of how the heart is reconstructed in Stage 1 here–it really is amazing!). Even after 3 stages of surgical repair, Kieran’s heart is still missing his entire left ventricle–it is incomplete, it is imperfect, and it is utterly unconventional.

Like the kintsugi tea cup you see above, my son’s heart has been worked on by a skilled master, and he carries the marks of repair–we call them scars–both inside and out. Kintsugi is the art of repairing broken ceramics with a gold alloy, yet far from being an isolated artform, it is also a highly-prized representation of the wabi-sabi view of the world.

You see, kintsugi pieces are prized precisely because they have been broken. They are said to be more beautiful, more unique, and “stronger at the broken places” (to quote Ernest Hemingway) than they were in their original form. The gold alloy you see in these pieces is merely symbolic of their real value–a representation of how the broken lines are so beautiful, and so valuable, that they are rejoined with gold instead of glue.

In our busy modern lives, we often try to repair our broken places with glue. We quietly work to piece our lives back together after life-changing events, hoping that if we do a good enough job, the cracks won’t be readily visible. But how strongly does a glue hold the pieces of a life, or even a teacup, together?

Sooner or later, we all carry scars, whether they be internal, external, or both. We will all break in different places, and in different ways. Kieran’s sternal scar, running from the base of his neck to the top of his belly, looks more like kintsugi than glue–shiny, smooth, hard-fought, and as if something of great value and detail was invested there. We can see this value in our own lives, and in each other’s, and appreciate how this process can transform us into something more beautiful and special than we ever realized.

Embracing and accepting the beauty of our scars can put us at odds with a culture that attempts to sell us perfection, youth, and improvement in the guise of shiny new things. But these things, despite their market price, come off a factory assembly line, and their value might literally be a dime a dozen. Maybe the real value is in our treasures that have been fixed and patched and healed with the gold of experience, wisdom, love, and kindness.

My husband has had a long-standing admiration for Japanese art and cuisine that was catching–early on in our dating relationship, he inspired me to start reading Japanese novels and opened up a new facet of literature I had never considered before. Little did I know, however, that years later, I would find so much comfort and healing in the notion of wabi-sabi. Wabi-sabi has permeated Japanese culture in the arts of gardening, flower arranging (ikebana), tea ceremonies, and fashion. However, wabi-sabi is not confined to visual art, spatial arrangement, or a style of dress. It is an outlook on life, a way of seeing the world, and a reconsideration of all things beautiful and imperfect. It suggests that the most beautiful things in life–the most unique, the most fascinating, and the most miraculous–are those that have become more perfect through imperfection, and more valuable by being broken.

Margaret King bioMargaret King is a stay at home mom who loves spending time with her family, avidly reading, community gardening, traveling, and exploring the outdoors. She is currently working on a young adult fiction series and enjoys flash fiction and science fiction writing as well. Margaret has worked in the past teaching English abroad in Nepal and Mongolia, which she counts among the best experiences of her life, along with her heart family journey which she is so happy to share with our readers.

Buczko Twins

Buczko (1)Our twins, Aiden and Madison were born at The Children’s Hospital of Philadelphia in September 2012 at just 31 weeks gestation, both with critical congenital heart defects. 

Aiden was born with an isolated left pulmonary artery and right aortic arch. He had his first, and hopefully, only, open heart surgery at three weeks old.

Madison had Tetralogy of Fallot with pulmonary atresia and multiple major aortopulmonary collaterals (MAPCAs). She had her first cardiac catheterization within 24 hours of being born. She has had two open heart surgeries (MAPCA unifocalization, April 2013; VSD closure and conduit replacement, December 2013). She will need several more catheterizations, as well as additional heart surgeries as she gets older. 


Our “miracle twins,” now 20 months old, have been through more in their short lives than any child should. Between the two of them, they have had three open heart surgeries; five cardiac catheterizations; one eye surgery; three hospitalizations for illness; numerous echocardiograms, x-rays, lung perfusion scans, barium swallow studies, and other tests; many, many doctors’ and physical therapy appointments; countless prescriptions; and more than $15,000 in out-of-pocket medical expenses. In addition, last fall we learned that Aiden had a brain injury called periventricular leukomalacia (PVL) and cerebral palsy, most likely a result of being born premature with a CHD. 

However, to look at our kids yoBuczko (2)u would barely notice anything is different about them. They are beautiful and happy and are making incredible progress! Aiden has high muscle tone in his legs and feet from his PVL, requiring the use of orthotic braces, but he is walking. Madison had vocal cord damage after her first open heart surgery and her speech was delayed for a while, but recently scored above average in communication in a developmental assessment.

Norah’s Story

Norah was born in 2009, seemingly healthy. At two weeks old she was hospitalized at Blank Children’s Hospital in Des Moines, IA for having had a UTI. She was referred to the University of Iowa Children’s hospital and diagnosed w Grade IV Bilateral Vesicoureteral Reflux. After a year of prophylactic antibiotic The Lord healed her little body and she never ended up needing the expected surgical correction. Yay! 

In this same year she was diagnosed w/ a benign heart murmur, an ASD that was expected to close. It was at a sick child visit, nearly a year after the diagnosis, that a doctor recommended we revisit the cardiologist. At this point her ASD was reported to be too large to be patched via the Cath. Lab. and she would need open heart surgery soon as her heart was dilated. She was put on Digoxin while we nailed down the details for surgery. 

We were scared and didn’t even know what kind of questions to ask to better prepare ourselves for what was about to happen. Both my husband I and felt like we were responsible to make an educated decision with the doctors help, but found ourselves wondering where to even start. I figured meeting with the surgeon would be a good place to start. 

In our meeting w/ the surgeon he did a good job of explaining how he would construct the missing septum using her pericardium tissue and assured us that he was the man for the job. When I asked him if we had any other options or places to go to get a second opinion, his response was something of the sort; She will be just fine right here. This type of surgery is like the appetizer before the main course. This was a very simple surgery for him to do and it will be one of several for the day.

His response bothered me. I wanted to hear statistics, some kind of hard facts as why I could trust this man w my daughter. For pete’s sake he was talking to a Math major and Air Traffic Controller. It never sat right w me that he never directly answered my question about a second opinion, but I attibuted a lot of those unsettled feelings to just being afraid of my daughter having to undergo open heart surgery.

Norah had OHS Jan. 2012 at age 2.5. We thank The Lord that we are one of those families that have a happy ending to the story. Norah’s surgery was a success and is considered cured. Indeed the surgeon was skilled at doing this repair and we felt blessed. But, I have to be honest. When I found out that there was another facility right here in our state that had a children’s hospital and pediatric thoracic surgeon. I felt deceived and that I was forced into making an ignorant decision on purpose. I don’t want to sound ungrateful for what our surgeon did for Norah. We are forever grateful to that man. I just wish we were given more information prior and allowed to make a more educated decision for Norah. If this story had not had such a “happy ending” I can’t imagine the pain, anger, and guilt I would potentially carry.

A Day in Little Rock

Traffic

The perspective was daunting.

There, in the cafeteria of Arkansas Children’s Hospital, behind tinted windows, gazing out over I630 I counted the endless number of cars that passed and wondered, “Do any of these drivers know what’s going on in here?”

With my well earned cafeteria bucks (earned from endless hours in the NICU pumping station), I took my breaks and ate and weeped and pondered the future of my newborn son, and cursed the passing drivers for not having anything more pressing to accomplish other than getting home.

At 5 weeks of age my baby boy was in a hospital bed in the CVICU, two floors above me, with his chest cracked open.  After successful open heart surgery to correct a congenital heart defect, his immediate post operative recovery did not go as planned.  My husband and I had ventured out of the ACH “biosphere” for the first time in three days, and were sitting in a booth at La Hacienda savoring a plate of refried beans and enchiladas, when we were texted to return immediately with nothing more than, “something is wrong.”

Upon arrival at the doors of the CVICU we were met by an Intensivist, who kept us out of the now Code Blue CVICU.  With an entire squadron of medical professional surrounding his bed, my only vision was of his cardiologist standing above him performing some kind of life saving intervention.  Numbly I asked, “Is he going to die?”  “I don’t think so…” was his reply.  How comforting.

In the hours that followed we were advised of his condition with words like, “unexpected”, “abnormal heart beat” “worst case scenario” “ECMO” “heart transplant.”  None of which had been uttered to us prior to surgery.  The most serious outcome from his repair, we were told, was the now mandatory use of antibiotics prior to any future dental work.  Funny to think that his teeth were to be our biggest worry.

As dusk gathered around the hospital, hours after his surgery, my husband and I were forced to make the decision – do we stay the night? Or go home to our other two young children?  A gentle-hearted Attending “talked us off the cliff” by advising us to “go home, hug your kids, and get some rest.”

After a restless night, pumping every three hours to manage my milk supply, with many phone calls to check on “Warrior” (our appropriately chosen code name), dawn broke, and he was still alive.  The drive back to the hospital was agitated.  What would we encounter when we crossed the threshold?   As we cautiously approached the doors we were met by a guardian angel, I mean a nurse who said, “I think we’ve turned a corner.”  Words that, should I ever get a tattoo, would be prominently etched on my skin.

In the days and weeks that followed, as I sat, watched, and waited, for monitors, tubes, and lines to be removed, I marveled at the compassion and competency of those who cared for my son.  Gratitude outpouring from a simple mom who had entrusted his care to so many whom I had never met.

In the years since his surgery, we celebrate his life by eating dinner at the ACH cafeteria on the anniversary of his surgical date.   Our normal dining spot is by those same tinted windows, where I still wonder why everyone is in such a hurry, and if any of the drivers, as they zoom by this grand temple dedicated to care and healing, ever stops to think of the thousands of lives behind the façade, families like ours who have a story.

The next time you are driving down the highway – take a look, a brief look, and say a prayer that you are on your way home.
© Jacob Slaton PhotographyMelissa McCurdy is a mother of 3; wife of 1; daughter, sister, friend, aunt; lover of football, politics, food, travel, walking, theatre and all things literary. She’s without talent in most normal Mormon activities – she doesn’t paint, sew, craft, scrapbook or quilt. She shelves and reads books and for a living, and could spend hours staring at bookshelves. Her youngest was born with a congenital heart defect and had open heart surgery at 5 weeks. She knows more about Children’s Hospitals than she ever wanted too. One of the highlights of her life was attending the first inauguration of President Barack Obama, primarily because she had better seats than Oprah.  And when she grows up, she wants to be the first female commissioner of the NFL.