If you’re like me, you probably didn’t know much or anything at all about congenital heart defects before it directly affected your life.  Of course, I knew there were birth defects that affected the heart, like any major organ in the body, but that was the extent of my knowledge.  We learned that our unborn baby had a heart defect and found out everything we could about CHD.

When we found out that we were expecting another child, we were really excited.  We had already been blessed with two healthy boys and were eager to know if we would have a girl this time around.  When we went in for the 20-week ultrasound, we were delighted to see our baby girl on the screen.  After a while, however, we started to wonder what was going on.  Neither of the ultrasounds we’d had with our boys had taken so long– it was here’s this, there’s that, baby fingers and tiny toes, and then we left with pictures.  This time, the technician seemed to be looking for something and kept circling the wand over my belly again and again.  She left the room abruptly and returned with our doctor, which made us pretty nervous.  The doctor told us she couldn’t see all of the baby’s heart and they needed to take a closer look at it.  We were referred to the Pediatric Cardiology Department at the Omaha Children’s Hospital for an echocardiogram of the baby’s heart.  We weren’t given a lot of details at the time, but were very concerned since we didn’t get a straight clean bill of health at the ultrasound.  Going in for that 20-week is such a comfort for most Moms and Dads at that point of the pregnancy- to make sure everything is ok, that all ten fingers and toes are there, discover whether it’s a boy or girl.  But we left knowing that we had to have our baby’s heart looked at further and that was a major worry for us… we didn’t know what to say or think or do.

When we went in for the fetal echocardiogram (which is an ultrasound of the heart alone), we met with Dr. Gumbiner, a pediatric cardiologist at Children’s Omaha.  He informed us that our daughter had a congenital condition known as Truncus Arteriosus (TA) with Ventricular Septal Defect (VSD).  The Phoenix Children’s Hospital describes the defect very effectively:

“The heart begins as a hollow tube, and the chambers, valves and great arteries develop during pregnancy. The aorta and pulmonary artery start as a single blood vessel, which eventually divides and becomes two separate arteries.  Truncus arteriosus occurs when the single great vessel fails to separate completely, leaving a connection between the aorta and pulmonary artery. Another congenital heart defect that occurs with truncus arteriosus is a ventricular septal defect (ventricular septum, or dividing wall between the two lower chambers of the heart known as the right and left ventricles). “

Dr. Gumbiner went on to explain that when the baby was born, she would need to undergo open-heart surgery to repair the defects.  From then until her birth was a waiting game.

Upon Lola’s birth, the wonderful doctors and nurses at the Nebraska Medical Center and the Children’s Hospital were very helpful in explaining to us what was going on and about Lola’s condition.  About two weeks after her birth, on October 2, 2007, she underwent open-heart surgery.  The surgery went very well, although it had been postponed for a week due to some unexpected hematomas on her brain that showed in a pre-op MRI.  The doctors also discovered in another echo that her heart showed not only truncus arteriosus with VSD, but an interrupted aortic arch.  Simply put, her heart defect had a defect, which required additional surgery and repair.

The outcome of the surgery was very successful.  Dr. Duncan, Dr. Hammel and their team of cardiac nurses and doctors were phenomenal.  Lola’s recovery was swift– within days we were able to leave the PICU and “step-down” to the heart floor, and we went home with our little lady shortly after that!

We knew that one of the things done to repair Lola’s heart defect was to put a conduit into her heart that would create the aorta.  As she grew, she would eventually outgrow the conduit and it would need to be replaced.  The doctors also wanted to correct a twist in her left pulmonary artery that restricted blood flow to her lungs.  They had tried twice before to stent the artery during her heart catheterization procedures, but the attempts were unsuccessful.  Lola’s second open-heart surgery was scheduled for June 17, 2011, just a few days before Father’s Day.  We attended the Operation Learn program offered by the hospital, which really helped Lola and her brothers learn about the hospital stay and feel more comfortable with the knowledge of her upcoming surgery.

Lola’s second surgery went as smoothly as the first, for an operation that involves putting a child on a heart-lung machine and operating on her heart.  When she woke from anesthesia, her first words were requesting “sparkling water” (that little lady loves her Pierrier!).  They were the best words I’ve ever heard spoken.  Recovery was a little different that time.  It was hard when she was an infant, because we were nervous of her incision and of inadvertently hurting her while holding her.  This time, it was hard because she was more aware and more vocal.  Snuggling in the hospital bed and watching episode after episode of Goosebumps was very good therapy for her (and her parents).  Lola has been a happy, healthy, sweet little lady from day one, and we owe it to that team at Children’s.  I could never say enough about the wonderful job that they did to help our daughter live a healthy, normal life.  A few short weeks after Lola’s second surgery, we were grilling out in our backyard.  Lola stood at the top of the yard and shouted, “Mommy, watch this! It’s amazing!” and took off running down the hill.  And it was amazing.  Seeing that little girl running, jumping, and laughing just weeks after having heart surgery was truly amazing.

Lola celebrated her second “heartiversary” this past June with a great visit at the cardiologist!  The conduit looks good, with minimal leakage, and no heart caths or surgeries in sight!  She wore her Heart Hero Cape to her appointment and told the nurse that she isn’t afraid of the heart doctor because she is a Heart Hero and has a superhero cape!   Finding out that your child has a heart defect is scary, devastating news for any parent to receive, but there is so much joy and amazement seeing what these Heart Heroes can do in the face of adversity!  Our little lady is a constant reminder of what superpowers like exceptional strength and courage can do for a person and we are so lucky to have her.

You can follow Lola’s heart journey on CaringBridge or read about the family’s mountain adventures on their blog: The Keller Family: A Journey Westward.