February is American Hearth Month and February 14 is Congenital Heart Defect Awareness Day.  Of course, we all know Valentine’s Day is a day filled with hearts and love, but also an excellent day to bring awareness to an extremely important and under advocated medical condition of the most vital heart of all – our own. 

According to the CDC, Congenital Heart Defects (CHDs), the most common type of birth defect in the United States, affects nearly 1% of live births in the United States each year.  About 1 in 4 babies born with a heart defect have a critical CHD. (CDC, 2019)[1]  To say that this statistic is staggering would be a gross understatement.  There are thousands of stories out there of families who have gone to Hell and back when their child was diagnosed with a CHD.  I would like to share one such story with you today that hits extremely close to home.

Gina, my best friend for almost my entire life (we met day 1 of Kindergarten) and her husband struggled to start a family of their own.  They tried every imaginable option including a boatload of fertility treatments.  For years and years nothing happened.  During this period, they went through the whole gamut of emotions that come with trying to get pregnant.  Inadequacy, anger, heartbreak, internal resentment of those who could – you name it, they felt it every day.

After 10 years of trying, they came to accept that they were simply not going to become parents.  At that point, perhaps due to the removal of the constant stress and focus on trying to get pregnant, they relaxed a little bit.

During the last month or so of 2005, they were in the “off” cycle between what would be their last fertility treatment before completely throwing in the towel. Little did they know, on January 6, 2006, their lives would be forever changed for the better.  It was on this day they found out they were, at long last, pregnant with their 1^st child!  Absolute shock, disbelief, and overwhelming elation ensued and continued throughout what was a very “normal” pregnancy and childbirth.  On September 7, 2006, Brody entered this big, beautiful world at 8 lbs. and 4 oz.  He was already tall, like his daddy, at 20.5 inches long too.

Mother and son were immediately bonded and all appeared to be well until about midnight on September 10^th.  Gina went in to check on him as he had been extremely fussy and had refused to eat since they had come home earlier that day.  In Gina’s own words…

He looked like a piece of marble. Called the birth place. Told them his temp was 92. They said, “if it was 92 he would be dead, but bring him to the ER if you are worried.” 

Gina, January 2020

We bundled him up and drove like a bat outta hell to the ER.  They took him in the waiting room from my arms. I didn’t get to hold him again until he was just over a month old. They stripped him and tried frantically to get an IV started, and finally got one in his belly button. The ER doctor put his hand on my shoulder and said, “I don’t know how this will turn out” and ran to work on Brody. They intubated him, started IV drugs, one of which keeps the shunt open for blood flow in the heart.  It is standard protocol for infants presenting his symptoms. The transport team at Sacred Heart, a local hospital, came by ambulance and got him.  They were amazing people.  As they were getting him ready, the pediatrician on call said it is anything between an infection and a heart defect. We race to Eugene behind the ambulance.  We get to the NICU, where we are met by the head attending doctor. He asks a barrage of questions and then says, “He has half a heart.  We are sending you to Dorenbecher Children’s Hospital in Portland.  If they can help they will, if not, you have a few hours.”

We left for Portland before the ambulance. They passed us.   We got to OHSU, where they had him fully diagnosed and were putting plans in place to schedule surgery.  He was going to be okay. We met with two cardiologists, the surgeon, and a host of specialists and others. This was at about noon on September 10. Brody had his first open heart surgery at 6 days old on Sept. 13, 2006. 

Editor’s Note:  This surgical procedure was called Norwood, and would be the first of three major surgeries Brody would need to have the best chance of survival.

The surgery went very well.  No complications.  During that initial hospital stay, they did another procedure to balloon the aortic arch as he was not breathing on his own at one point.  Finally, the family was able to return home on November 4, and an unbelievably blessed and eternally grateful family got to celebrate their first holiday season together.

In January 2011, during a now routine echocardiogram, the doctors discovered he was not doing well.  Gina recounts what happened next. 

“We were immediately admitted. So lots of cath labs and tests followed. At this time, they did another ballooning procedure to widen the aortic arch again.  It didn’t work.  They put a stint in – much better. We had at least one doctor’s appt a week, between Portland, outpatient in Eugene and Roseburg for the next several months.  The next planned surgery was when he reached 5 months old; however, he ended up developing gall stones at 5 months old, and had to have a surgery to remove his gall bladder. Then 3 weeks later he had the Glenn surgery (the 2^nd of the 3 planned procedures) at the end of March 2007. After that he stabilized for the most part. He got his NG tube (nasal feeding tube) removed in June 2007, and came off oxygen full time that August, but continued seeing his cardiologist on a regular basis.

In late Summer 2009, we were told he had an aneurysm on his Aorta and they needed to take care of it. So we had an unplanned open heart surgery in August 2009. It went great. Then, fast forward to March 2011 – time for the last planned heart surgery. Dorenbecher in Portland wasn’t confident he would survive the surgery with the process they used so they asked other cardio hospitals and Dr Hanley at Stanford, a world class teaching hospital in northern California, said to bring him down. He had his 3^rd and final planned open heart surgery, the Fontan, on May 13, 2011 at only five years old.  He did amazing!

We got to come home in early June. Two weeks later, we went to OHSU for an echo and discovered he had over a pint of fluid sitting on his left lung. Immediate cath lab, and another 1.5 weeks in the hospital. He has been hospitalized several times since. He went into heart failure the summer of 2012.  More heart caths followed, a restart of the meds he had been weened from a bit earlier in the year, and an additional 2 weeks in the hospital before coming home.

In November 2011, Gina and her husband welcomed a second son, Logan.  Of course, with all the complications they had experienced with Brody, the doctors were overly cautious with Gina every step of her pregnancy and she underwent ultrasounds every month.    Thankfully Logan was born with a perfectly healthy heart, and now their family was complete. 

The road from there has been one filled with enormous and unexpected bumps, curves, and even more unknowns, but Brody’s health has made great strides.  In his 13 years of life so far, he has undergone more than 100 echocardiograms, 4 open heart surgeries, 8 heart caths, 2 balloonings, an anuerism reduction, and a g¹1all bladder removal. He currently has a clot in his aortic valve which doctors are working hard to reduce.  He is currently in 7^th grade, plays baseball, participates in boy scouts, loves being a big brother to Logan (when he’s not ready to strangle him for being an annoying little brother), and is the apple of his Mom’s eye. Gina would tell anyone out there who may be going through some or all of these incredibly difficult obstacles to NEVER GIVE UP HOPE! Research and new advances in treating CHD are happening every single day. Be the best advocate you can possibly be for your child and have faith.

He has had the most “normal” childhood possible thanks to Gina’s unconditional love, tireless advocacy, and a lifetime of sleepless nights. In June of last year, I had the honor of meeting Brody and Logan for the first time in person.  It was such a pleasure for both Gina and I as life-long best friends to finally meet each other’s children. I was immediately drawn to Brody.  He exudes an inner light that is impossible not to feel or be touched by in some way.  He gives some of the best hugs I’ve ever received too. ?

After spending a couple of days with Brody and Logan, I was left with one thought – angels on this earth do exist, and come in all shapes and sizes, but only the very best come with half a heart.

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[1] CDC, 2019 – https://www.cdc.gov/ncbddd/heartdefects/features/kf-chd-estimates-us.html