31 for 21: Hailey's Heart

100,000 babies worldwide are born each year with congenital heart conditions.  35,000 in the US annually (1 in 125 births).  Heart defects are the among the most common of all birth defects and are the leading cause of birth-defect related deaths.  In the United States, about 1.4 million children and adults live with congenital heart defects today. Almost all are able to lead active, productive lives.

There are about 6,000 babies born with Down syndrome each year in the United States (according to the CDC).  Almost 50% of those children are born with a congenital heart condition.  Hailey happened to become another statistic with that.  As much pain as the Down syndrome diagnosis gave us initially, it paled in comparison to the pain of uncertainty of her heart defect.

When Hailey was first born, we were told that there was a possibility of a heart defect.  All 6 neonatologists that saw Hailey during those first 17 days of life, commented that they did hear a murmur.   They all through it was a slight murmur.  Well, what we found out when we were at Cincinnati Children's Hospital was the softer the murmur the larger the hole.  St. Patrick's Day 2011, we were told that Hailey did indeed have a heart defect and they were 90% certain that she would need open heart surgery within the first 6 months of her life.  Some children are fortunate enough that their holes will close.  Hailey's was too substantial and that wasn't the case.  Hailey had two defects...a large VSD (ventricular septal defect) and 3 small ASDs (atrial septal defect).  The heart has four chambers...the lower two chambers are the ventricles.  Hailey had a large hole in the wall between those two chambers (VSD).  This hole allowed the blood to flow back and forth.  Her heart was working harder because extra blood was traveling to the lungs.  Some blood was going to the lungs twice.  This causes pressure to on one side of the heart to be higher than pressure on the other.  This also can cause permanent irreversible damage to a child lungs if it continues for too long.  Her ASDs were very tiny holes that they generally let close on their own...think like swiss cheese.  Because it was necessary to close the VSD, they opted to close them at the same time. 

Our goal that day was to take Hailey home watch her for heart failure and attempt to get her to 12 pounds.  They failed to tell us what a daunting task that would actually be.  Some children with heart defects are using all of their energy to breath and have their heart beating.  There isn't much left after that.  Feeding Hailey was an issue from day one.  Everything exhausted her.  Eating was a every 3 hour chore.  I prayed with each feeding that she would take the full bottle.  That it wouldn't take her an entire hour to eat.  That she would wake up enough to eat.  Every doctor appointment I held my breath while they weighed her...just praying for a weight gain.  Every cardiology appointment, I held my breath and prayed for a miracle...that Hailey's heart defect was closing on its own and we could avoid surgery.  We left each cardiology appointment with "she's holding her own.  We'll see you in 3 weeks.", an increase in her medicine to keep extra fluid from building in her lungs, and an increase of calories in her breastmilk (to gain weight).  So we returned home and we watched.  We looked for her changing to a blue color.  We watched her chest collapse with each breath she took.  We pleaded for her to finish each bottle.  We checked her breathing in her sleep.

Finally, in May, we were told...nothing was changing.  She wasn't getting to 12 pounds.  Were we ready to scheduled surgery?  I had a weird feeling.  I felt weight lifting off my shoulders.  We could stop waiting and worrying.  We could stop living in the "life before surgery".  We were getting a surgery date.  I cried.  I worried.  I scoured the internet.  It seemed like a lifetime from her appointment in May until her surgery on July 12, 2011.  I soaked up every moment I could get with that little girl and her brothers.  I had to.  Who knew what would happen on July 12.  The odds were in our favor.  According to the Cincinnati Children's Hospital website, surgical closure of isolated ventricular septal defects is uncomplicated in 99 percent or more of cases.

I'm not sure I will ever forget certain parts of that day.  Hailey's surgery started at 7:30 a.m.  It took almost 90 minutes before we received our first phone call about her surgery.  She was so tiny, it took a very long time to get all of our lines in and get her under anesthesia.   That first call was also the call that said the doctor had started.  If any parent has ever been in a surgery situation with their child, you know what that means.  You start getting visuals.  In this case, I knew that my little girl was soon to have her heart stopped and a machine would be the only thing keeping her alive.  It meant that her chest had been cut open and her life was in the hands of the surgeon and God.  I could do nothing to protect my daughter...nothing to save her life.  It is a feeling that basically took me to my knees.  Then we did what so many other parents have had to do...we waited and waited.  Our next phone call came an hour and half later and it wasn't what we had anticipated.  The surgery was over.  Hailey's heart was beating on its own and she was headed to CICU.  The surgeon came to see us about 15 minutes later.  Our conversation was brief.  Her VSD was larger than they had thought.  It was patched with gore-tex (waterproof, breathable fabric).  In time, her tissue will grow over and through it and it will become part of her heart muscle.  The tears overflowed from my eyes as we expressed our gratitude. 

We were fortunate.  Hailey had no complications.  She had her surgery on July 12...Tuesday morning.  We were home before lunch on July 15...Friday morning.  They contemplated sending her home on Thursday but they don't like to release directly from CICU.

I truly can't explain the feeling we felt taking her home.  It was like the sky was once filled with clouds and suddenly they were gone and the sun was blazing.  The weight we had carried on our shoulders from the day we were told she had a defect was gone.  It was sort of funny.  We had expected Hailey to be sick and in pain when we brought her home.  We sent the boys to Indiana to stay with family for a week while Hailey recovered.  We brought home a happy, giggly little girl who was eating bottles faster than she ever had in her life.  She took Tylenol and ibuprofen for two days and nothing after that.  She wasn't sick...she wasn't in pain.  She was perfect!  We actually remodeled our bathroom and caught up on other projects that week.  I felt guilty.  We had neighbors bring us meals and we were painting our bathroom!  She was such a different baby.  She was still our Hailey, but her chest didn't sink in with each breath.  She was eating her entire bottle.  She was eating them in 15 minutes and not 1 hour and 15 minutes.

July 12, 2012, we celebrated Hailey's first heart-versary.  We will never forget that day or those months that we watched her struggle.  I thank God every day for medical advances that saved her life.  We are going to always celebrate July 12th because it is the day Hailey was given a second chance at life and I'm sure she is going to do great things!

Last photo of Hailey's chest unscarred

Not so fashionable hospital gown

All better, Mom & Dad!

Incision

Happy 1 yr Heart Day!

Her chest scar is quite faint.

Honestly, it is hard to look at her pre-surgery pics.  She looks so tiny and not well.  Looking at her now...she looks like such a different baby!!!