Paul Fuss and JJ Gardiner welcomed their second child, another son, Sean, to their family on May 30, 2006. Sean was a happy baby who appeared to be eating well and growing normally. At his two month pediatrician appointment, the doctor thought he heard a murmur in Sean’s heart and suggested his parents follow up with a pediatric cardiologist.

 

Sean’s parents took him to see Dr. Benheim and were stunned to learn that Sean had three defects in his heart:

 

• a patent ductus arteriosus (PDA) which is an opening between the pulmonary artery and aorta that should close at birth but didn’t in Sean’s case,

• an atrial septal defect (ASD) which is a hole between the left and right atriums,

• and a large ventricular septal defect (VSD) which is a hole between his left and right ventricles.

 

As a result of these defects, much of the blood that was supposed to get sent to his body was being sent back to his lungs. His lungs were getting flooded and his heart was working hard to get blood out to his body.

 

Sean was immediately admitted to Inova Fairfax Hospital for Children. Sean’s mother, JJ, says that arriving at the hospital and seeing the baby hospital cribs was “overwhelming and so much to take in.” She was thankful when a Child Life Specialist helped not only she, her husband and Sean orient to being in the hospital, but also provided them with toys and guidance for their three year old son Nolan so they could help him understand something about what has happening to his baby brother.

 

Shortly after Sean was admitted to the hospital, he began showing typical symptoms of VSD including lack of energy and visibly labored breathing. Within three weeks, Sean went from the 50th percentile in weight to the third. Doctors needed to act quickly.

 

Doctor’s continued to monitor Sean’s health and decided by October that in November they would surgically place a patch in Sean’s ventricle that would permanently repair the hole. Unfortunately, Sean developed Respiratory Syncytial Virus (RSV) a serious respiratory illness that affects children. The RSV prevented Sean from being strong enough for surgery because he would not be able to tolerate the heart lung bypass machine that would function for his heart and lungs during the surgery.

 

It can take several months to recover from RSV and something needed to be done to help Sean until he was strong enough for surgery. Pediatric surgeons Dr. Collazo and Dr. Shen decided to place a band around Sean’s pulmonary artery to reduce the blood flow to the lungs. During the same procedure, they were able to repair Sean’s PDA. While still open chest surgery, it did not require the heart lung machine. After the surgery, Sean spent about a week in intensive care and another week in the hospital.

 

JJ said that throughout his hospitalizations, the team at Inova Fairfax Hospital for Children was fantastic to her entire family. “When we brought Nolan to visit Sean, the nurses would unhook Sean from as many machines has he could tolerate for half an hour and they would take Nolan to the play room. It really made a huge difference to our family to have everyone recognize that the entire family was going through this experience, not just Sean.”

 

Within a month of receiving the band, Sean’s health began to improve. He gained weight, had more energy and was steadily recovering from the RSV. While the plan was to perform the patch surgery once Sean recovered, his pediatric heart surgeons had heard about a new VSD closure device they thought would work for Sean, and using the device would not require as extensive surgery or the heart lung machine.

 

Because the device was still in trials, the surgeons requested special permission to use the device. After about two months or requests and paper work, permission was granted and on May 8, 2007 cardiologists Dr. Benheim and Dr. Tafiq teamed with cardiac surgeons Dr. Collazo and Dr. Shen to open Sean’s chest, deploy the device and permanently fixed Sean’s heart.

 

Within six days, Sean was home and doing well. He continues to gain weight, has learned to crawl and is developing a wonderful personality. While his actual first birthday occurred during his recovery from surgery, his parents are planning a large and celebratory first birthday party for him at the end of this month.

 

“I just can’t say enough about how wonderful the doctors, nurses and Child Life Specialists are” says JJ. “We were just completely impressed from one end to the other of all the care and attention we received. Everyone just led us from one thing to the next, we were never left to fend for ourselves.”