Mom 248

Abby was my first child.  My husband and I awaited her arrival eagerly.  Like all expectant parents we daydreamed about how she would look, if she would cry a lot or a little, what we would name her, and how life would be different once she arrived.

Immediately following her birth, we were told she had a loud heart murmur.  I thought nothing of this since the doctor told me they often cleared up on their own in a few days.  I had also read something about this in my “What To Expect When You’re Expecting” bible!  However, the day for our discharge came and it was apparent that something wasn’t right.  Nurses kept coming in and taking Abby for tests.  One test lasted two hours.  Soon, her doctor appeared in our room and explained that Abby’s heart murmur had definitely not cleared up.  They had performed some tests on her and they had made us an appointment the next morning at the nearby children’s hospital with a pediatric cardiologist.  The news was unexpected and completely overwhelming.  I was suddenly filled with fear and dread.  I cried all the way out of the hospital with little Abby in my arms and I cried all the way home.  The fear of the unknown was nerve wracking, wondering what they may tell me the next morning.  I couldn’t talk on the phone without crying, my husband had to do all the explaining to well wishers and sympathizers.

The next morning dawned early and we arrived for our appointment.  After a whirlwind of X-rays, echo cardiograms, EKG’s, we were ushered into a waiting room to wait until the tests were back and the cardiologist could see us.  I looked around at the other mother’s.  I saw older children who appeared healthy, young babies who had oxygen tubes and tanks to help them breath, a baby with down syndrome and a cute little bubbly four-year-old.  They all seemed so at ease in the waiting room.  My mother had talked to some of them, asking questions and making friends.  I wanted nothing to do with any of them.  It was like they were part of some strange club that I wanted nothing to do with.  They had their own language that included medical terminology that was hard to understand and frightening.  I wanted it all to go away.  When the cardiologist called us in to explain the test results I realized however that none of it was going away.  We were about to become a part of this unique society.  The society was made up of parents of children born with Congenital Heart Defects.  Abby was definitely a part of them.

Her doctor explained that she had Tetralogy of Fallot, the most common of CHDs (Congenital Heart Defects).  Tetralogy is defined by 4 distinct heart abnormalities.

  1. Ventricular septal defect (VDS)–this is a hole between the two bottom chambers of the heart.
  2. Pulmonary stenosis–narrowing of the pulmonary artery and valve
  3. Enlarged right ventricle–this is caused by the overworking of the right side
  4. Overriding Aorta–the aortic valve has formed in the wrong location.


This was all explained and then the questions started….for some strange reason, my first and absurdly largest concern was if she would have her chest cut open and have a scar there.  How odd looking back now that my first thought was about creating a scar on her beautifully perfect little body.  I was told, yes, she would need open heart surgery at some point to correct her defect.  The scar would run from the hollow of her neck to just below the sternum.  We were educated on surgery and the dangers associated with it.  We were told she may have some other serious syndromes or diseases.  We were told that Tet babies often turn blue when they cry or have a Tet spell.  If that happened we needed to tuck her little knees up to her chest.  We were then told we would come back monthly for checkups until it was decided to perform the surgery, probably around 12 months.

I was emotionally drained and devastated.  The cardiologist left my husband, my mom, and myself holding my three day old baby in the room and it was silent for a moment, until I broke down crying.  My mother came and took Abby in her arms and put her arms around myself and my husband and we all sat there, crying together.

The next few months flew by.  We experienced the firsts most parents can’t wait to experience.  The first coo, the first smile, the first funny face…so many happy firsts.  We also experienced some firsts that many parents will never experience.  The first sickness, requiring hospitalization and IV drug administration to clear it up, the first Tet spell, the first emergency room visit.  We had the good news that Abby’s chromosomes were all normal–no syndromes or diseases.  Abby was a light in our lives.  She quickly became the sunshine to my soul and to all those who came in contact with her.  She was a remarkable baby, engaging and uplifting all who knew her.

abby surgery 008

In early June Abby had a severe fainting spell.  We rushed her to the emergency room and she was admitted to the hospital again.  It was decided that her surgery needed to be performed as soon as possible.  Her heart was having to work too hard to keep her little body supplied with the blood and oxygen she needed.  The surgery was scheduled for Friday of the next week.  We took our little girl home on oxygen tubes and tanks and waited.  One week.  One week until the day we both dreaded but anticipated eagerly.  After the surgery we knew Abby would be a healthier more energized baby.  She could start to roll and sit and eat and play without wearing herself out.  She could cry a little, if her mommy would let her, without any fear of detrimental effects.  However, she first had to make it through the surgery, a feat in itself.

abby surgery 023

The morning of June 6 I went into Abby’s little nursery and watched her sleeping in her crib peacefully.  I watched her breathing and I watched the slight fluttering beneath the ribcage where her heart beat.  The heart that both kept her alive but threatened the very life it supplied.  A perfect heart that took in every bit of love and joy this life had to offer.  The perfect broken heart.  We roused our angel and drove to the hospital, my husband and myself making small talk, avoiding any discussion of what the day may bring.  Our children’s hospital sits atop a hill overlooking the city.  The morning was just starting with the sun peeking over the mountains behind us.  When we got to the hospital, the city lights were still on but the sun was touching the valley.  We parked facing the beautiful scene and as I took Abby out of the car her big blue eyes went wide.  She stared out across the thousands of twinkling lights and the glowing morning sun.  She looked at me and smiled and then turned her beautiful face back to the scene.  I choked back tears and knew this moment was forever imprinted on my memory.

abby surgery 036

Abby’s surgery story is for another page.  The ups and downs of the surgery and the singularly spiritual nature of what occurred is a tale I will tell elsewhere on this site.  But know that Abby surmounted tremendous odds and she is still the sunshine in our lives.  She is a spunky little girl who loves to read, play the piano, and sing.  She is small for her age, she has a heart that still doesn’t fully function as it should, she still needs more open hearts surgeries but, she is still here, filling each day with as much as she can.  She loves life and lives it fully.  This site is dedicated to her and to thousands and thousands of other children and adults who live with CHD.  Their fight for life is hard and arduous, their courage and tenacity is amazing.  Their spirits are strong and their hearts are truly perfect broken hearts.




1 Comment Add your own

  • 1. Melissa  |  February 22, 2010 at 8:01 pm

    Dr. Di Russo also preformed our daughters 1st open heart surgery. Glad to see Abby looking so great! I’m part of a local support group here in Utah if you (and Abby) are interested in connecting with other heart families and kids. There is a camp during the summer, and a bunch of other great activities. Best of luck!


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