Little Hearts


We found out about our first pregnancy in early August 2005.  In early November, we went in for our ultrasound.  My husband and I went back into the exam room to wait for the doctor and he then asked us to come into his office and told us that there was something wrong with our son's heart.  We had to wait two weeks to get into the specialist.  At our appointment, he told us that our son was diagnosed with Hypoplastic Left Heart Syndrome.  He was really great about explaining what the difference was between a normal heart and our son's heart.  He also told us about the options and we decided to go to the University of Michigan for the three surgeries as Dr. Edward Bove does a large volume of Norwood procedures. 

We went in on March 20th to induce labor at around 7:30 in the evening.  When they put the heart monitor on me at around 9:00, they noticed that his heart rate was experiencing an arrhythmia.  The doctors decided to get me right into the operating room and our son, Jack, was born by c-section at 9:52.

Jack spent eight days in the pediatric ICU before having the Norwood procedure with the Sano shunt.  The surgery went extremely well.  The next day though his oxygen levels were hovering around the high 50's and the low 60's so they took a closer look and found a small clot in the bag around his heart.  Dr. Bove corrected it and Jack started to do a lot better.  He was off the ventilator and almost all his tubes about five days later.  He was home two and a half weeks after surgery.

At 5 1/2 months of age, Jack underwent his second surgery, the Hemi-Fontan.  They also discovered a narrowing in his aorta during the catheterization a month prior and did a balloon procedure to open the narrowing before taking him up for his open-heart surgery.  We later learned that this was never done before at this hospital but they felt  it was the best for Jack as it limited the amount of surgery time and difficulty doing it that way.  Jack spent about two days in the ICU and was home in six days.

When Jack was almost a year he had another balloon procedure at Devos Children's Hospital in Grand Rapids, MI to open his aorta a second time.  This surgery was also sucessful and the narrowed area has remained open since then.  However, during the catheterization, they bumped a node inside Jack's heart, causing a condition called heart block.

At 17 months, we went back to U of M for Jack's Fontan surgery where they also put in a pacemaker.  We were there for 5 1/2 weeks and had to go back two weeks later to drain the area around his lungs.  Since then, Jack has been doing great!  Walking all over the place, talking up a storm and getting into everything.

In April 2011, Jack sadly passed away.

Story by Jack's mom Katie - Michigan

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Little Hearts, Inc.

P.O. Box 171, Cromwell, CT 06416
Phone/Fax (860) 635.0006  Toll Free 866.435.Hope
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