Savannah, born 2005

Savannah was born April 17th, 2005 at 34 weeks by emergency c-section. She did not stay there very long before she was wisked away to Boston Children's Hospital.

 

Before she was born, I knew of two birth defects she would be born with. These were a CHD and esophagael atresia. She presented with other birth defects that were obvious at birth and others that took a bit of time to identify. She had an imperforated anus, trachea-esophageal fistula (TEF) and her left leg is a little longer than her right. All in all, she has VACTERL association.

 

She spent the first 8 months of her life at Boston Children's Hospital (2 months in CICU, 5 months in NICU and 1 month on the recovery floor). In those 8 months, she had 7 surgeries - temporary pacemaker for 1 month, TEF surgery, 3 surgeries to repair the esophageal atresia and a nissen fundoplication.

 

Her original heart defect was DORV with pulmonary atresia, right ventricle to pulmonary conduit and VSD. Before Savannah's 1st birthday he had a cardiac catheterization. It showed that she had mitral valve stenosis and regurgitation as well. They dilated the valve. Four months later, Savannah had another cath. They dilated her mitral valve again, but Savannah seemed to get worse over a weeks time. Then we talked about surgery. A month later, she would have her second open heart surgery to repair her mitral valve and replace her conduit which went successfully. She had a temporary pacemaker for three days.

 

With her heart doing better, she was able to get a fundoplication surgery and an anal pull through surgery which helped her in her development.

 

In September 2007, Savannah had another catheterization. It showed her her conduit was dilated and may be pressing on the coronary artery, the pressures in her heart were high, and the left ventricle was not relaxing well. This meant she needed a third open heart surgery to fix the mitral valve, replace the conduit, and as a precaution, permanent pacing wires were put in. Savannah had a harder time recovering from this surgery because she developed clostridium difficile and heart block.

 

Electrophysiology felt for Savannah's safety she needed a permanent pacemaker for back up. I though with time Savannah would not need a pacemaker but my feelings changed when one day her heart stopped beating for eight seconds. In October, they put in a permanent pacemaker. She ended up staying at Children's for about 1 1/2 months. Since this last surgery, Savannah has become a totally different kid. She can walk about 100 feet, point to what she wants, use some sign language, and she waves hi and bye. The only setback has been her g-tube feeds.

 

Today, she goes to school full time. She is loved by all and continues to prove to everyone how strong she is.

 

Story by Savannah's mom, Lynda - MASSACHUSETTS