Hannah’s Heart Story

Ask any parent, and they will tell you the same thing.  You’re never, EVER, ready to have kids.  There are so many emotions that rush over you like a flood when you first realize that you are now completely responsible for another human being’s very existence.  Everything you thought was important prior to that moment becomes instantly irrelevant as you look into the eyes of a child.  Your child.  When they smile, you melt.  When they cry, you’re heartbroken.  When they’re sick, the only thing you care about is making them better.

We had a perfect pregnancy, two perfect ultrasounds, and a perfect delivery.  Our first child, Hannah, was born on July 12, 2006, in Baton Rouge.  She was the happiest baby we’d ever seen.

After five months of being a perfectly healthy baby girl, her appetite suddenly decreased dramatically.  No matter what we tried, we could not get her to eat much.  We immediately took her to the pediatrician to find out what was wrong on December 15, 2006.  That was the date our lives were changed forever.

Expecting to find out that she had her first ear infection, we were shocked to learn that her heart was racing at 212 beats per minute.  Dr. Wood thought that she probably had the common heart condition SVT, or supra ventricular tachycardia.  He sent us directly over to Pediatric Cardiology Associates to see Dr. Michael Brumund for immediate evaluation.

Upon arriving at the cardiologist’s office, an echocardiogram was promptly taken of Hannah’s heart.  The silence in that dark room was nauseating.  The doctor walked in, stared at the screen, and the only thing we remember him saying was “Well it CAN’T be ZERO.”  At the time, we had no idea what he was referring to, but it obviously did not sound good.  When they were finished, we were sent to wait in an empty room for the results.  The door opened, and the nurse walked in and set a box of Kleenex on the table.  Our hearts sank.  We knew that whatever we were going to find out about Hannah’s diagnosis was not going to be good.

Dr. Brumund came in and explained the situation.  Hannah was extremely sick.  The left ventricle of her heart was unbelievably enlarged, and her shortening fraction (or the “squeeze” of her heart) was measured at LESS than 1% (this is the measurement he referred to in the echo lab; normal is around 40%).  This basically meant that her heart had almost no function at all.  It was not even beating, only rocking in her chest.  The fact that she was still breathing and coherent was a miracle.  Looking over at her, she still even looked pink.  It didn’t make sense.  She was diagnosed with dilated cardiomyopathy, and was immediately admitted to Our Lady of the Lake PICU.  Dr. Brumund explained that cardiomyopathy can be difficult to treat, and patients typically fall into one of three categories: 1/3 make a full recovery, 1/3 make a partial recovery and have some limitations, and 1/3 do not survive.  It was obvious at the time that Hannah was closest to the latter third.

To say our world came to a halt would be an understatement.  We felt like we had been hit by a bus.  Our first child, who had been completely healthy until this point, was now on the verge of death.  We had no idea how or why it happened, but honestly we didn’t even have time to try and figure it out.  We were fighting for our daughter’s life.  They how or why was irrelevant.  All we could do was pray that God would restore her heart to its normal, healthy condition.

Throughout her first night in PICU, Hannah’s heart function deteriorated slightly, if that was even possible.  She was placed on a ventilator and given a paralytic so that her heart wouldn’t have to work so hard.  Dr. Brumund called a family meeting and informed us that it was likely she would need a heart transplant.  We were devastated, although somewhat relieved to know that we at least had an option.  The decision was made on December 17 to transfer her via helicopter to Ochsner Medical Center in New Orleans, LA, which had a pediatric heart transplantation team.

At Ochsner, Hannah was evaluated by multiple cardiologists and intensivists.  The plan was to put her on multiple heart medications and just “wait and see,” while preparations were made for heart transplantation.  The cause of her condition at this point was unknown; it was undetermined if the cardiomyopathy was genetic or caused by a virus.  A heart cath was performed to rule out any possibility of structural anomalies, and four biopsies were taken from the right ventricle for analysis (taking samples from the left ventricle was far too risky).  The cause was still unknown after the tests.  The consensus among all the doctors was that a heart transplant was still her best option.

One week later, Hannah was officially listed as a status 1A on the transplant list, meaning that she was at the very top of the list; if a heart became available, it was hers.  We felt very uneasy about this and prayed day and night that God would heal her own heart.  Living with a heart transplant would be very difficult, and we were not at peace with that plan in the slightest.

Over the next two weeks, we waited.  The transplant team waited for a heart, and we waited for a miracle.  Christmas came and went, and Hannah’s first picture with Santa Claus was taken in PICU without her even knowing it.  Finally, she was stable enough to be taken off the ventilator, which was a huge step in the right direction.  She began breathing without assistance, and her blood oxygen levels rarely fell below 98%.  By the grace of God, Hannah began showing small improvements in her cardiac function little by little.

Hannah continued to improve over the next week, and was eventually moved out of the PICU onto the pediatric floor.  She was discharged from Ochsner on January 8, 2007, with an improved shortening fraction of 9% to 13%.  Still nowhere near normal, but certainly much better than 1%.  She was officially downgraded on the transplant list, from status 1A to status 7, which left her on the list but inactive.  She had lost a good bit of weight and now weighed only 11 pounds at nearly 6 months old.  We came home on 10 different medications and tried to resume a life of normalcy.  We celebrated Christmas two weeks late and then focused on eating and gaining weight.

In February, we were notified that we had a certified letter at the post office to pick up.  Standing in line for the letter, Lori noticed the postal worker’s daily inspiration calendar on the desk.  The verse was Ezekiel 36:26, “I will give you a new heart and a new spirit.”  The letter we received that day was evidence of the miracle we had prayed for; it stated that Hannah had been officially removed from the transplant list.  Our EXACT prayers had been answered.  Dr. Brumund later told us that the odds of someone being removed from a transplant list after being listed status 1A are ZERO.

Although Hannah’s heart function continued to make minimal improvements, her cardiomyopathy was still very serious.  In April 2007, Hannah stopped eating again.  Upon evaluation, her heart rate was jumping into the 270s.  This time, though, Dr. Brumund discovered that she had a complex rhythm disturbance that had not presented before.  She was diagnosed with Ectopic Atrial Tachycardia.  Although we were terrified to have a second diagnosis on top of an already weak heart, we prayed that this was the answer they needed to treat her even better; that by treating the arrhythmia, her heart function would dramatically improve.  And it did.  Over the next year, on two new medications, Hannah’s heart returned to normal size and function.

As of today, her cardiomyopathy is no more.  She still takes two medications that control her rhythm and rate, and is monitored annually with an ultrasound, EKG, and a holter monitor.  There is a small chance that she will outgrow the arrhythmia altogether, but if not, it can be ablated in the cath lab when she is a little older.

Stories like this just do not exist.  We know that we have witnessed a true miracle.  To go from a status 1A on the heart transplant list to now having a normal sized heart with no physical limitations doesn’t just happen.  Today, Hannah is the most vibrant, energetic kid that we know.  Her abundant joy for life is contagious, and we know that God has HUGE plans in store for her.

This website started in 2006 as a blog for us to keep everyone posted with updates to Hannah’s condition.  Today, it serves as a reminder that we serve an AMAZING God that walks with us through our darkest times.

This is Hannah’s Heart Story.