NOTE FROM THE MACS STAFF

Jessica's story has NOT been updated yet since she passed away on July 27th, 2005. We will update the end of her story as soon as we receive more information from her family.

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Jessica's Story
written by dad Mark

A happy child by all outward appearances, Jessica suffers from a Congenital Heart defect called Tetralogy of Fallot, which was diagnosed 4 hours after her birth when they heard a heart murmur. This was not a problem that was found during pregnancy and since it is congenital heart defect was not expected since it is not hereditary. The only issue at birth was that she was breech and had to be delivered by C-Section.

Tetralogy of Fallot is a heart problem which consists of four different heart defects:

The first major one is a ventricular septal defect. This is a large hole between the two ventricles that lets venous (bluish) blood pass from the right ventricle to the left one. From there it goes to the aorta and on to the body without passing through the lungs to be refreshed with oxygen.

The second major component of Tetralogy of Fallot is a stenosis (narrowing) at, or just beneath, the pulmonary valve. The narrowing partly blocks the flow of venous blood into the lungs. This varies in severity from child to child.

The last two components of Tetralogy of Fallot are:

(1) the right ventricle is more muscular than normal;
(2) the aorta lies directly over the ventricular septal defect.

Born on January 8th, 1994, she has had 2 open heart surgeries, the first at 6 months old and a Full Corrective repair of all four defects followed by a Pacemaker being placed 2½ weeks later, for she had no underlying rhythm of her own. The second Surgery coming at 5 years old in 1999 which resulted in a Pulmonic Valve replacement facilitated by way of a Cadaver Valve and a replacement of her Pacemaker with a newer and more sophisticated Dual Chamber model.

About a year ago we noticed hearing problems and Jessica was diagnosed with hearing loss in both ears severe enough to warrant a hearing aid, but not bad enough yet that she can't be helped by some speech therapy. Up until now these were the hardest problems we had to face.

Most recently, Jessica started 1st Grade and was absent more days than she had ever been. The diagnosis by the pediatrician was upper respiratory infection and treated as such. She would get better and go back to school for a week or two before getting sick again. It came to a point where she was eating and throwing up and this too coincided with stomach flu going around the school and neighborhood. The day she went to the Cardiologist for her regular appointment she also woke up with a very puffy face and they found some strange readings on her pacer info and chose to do an Echo.

Dr. Rhoden found her heart enlarged to 2 times its normal size and realized she was in Congestive Heart Failure. Advised to either Lifelight (For those not familiar with this it's a helicopter that will transport critical patients to and from hospitals) or drive our daughter to her hospital, we chose to take the less stressful drive and knew in our minds that this was not good, our problems were only beginning. Jessica was a direct admission to CICU at Miami Children's Hospital. She spent 5 days there before being sent home with oral medicine which as of this writing has been increased 3 times now. We were told she had to come back for a Cardiac Cath in preparation for being placed on the Transplant List for a new heart.

On April 30th, 2001 we went to Miami Children's Hospital for Jessica's Cath Procedure. We met with Dr. Zahn who after answering some questions for us, told us that they didn't think from her appearance and bubbly bouncing around that she would be an immediate candidate for Transplant though that was probably a possibility down the road in a year or two. Before he left us he told us that if they got in there and they found her any sicker than she appeared to be then it would be kind of amazing, but they didn't foresee that outcome right now.

An hour and a half later Dr. Zahn came out to talk to us.... He shut the TV off in the Lounge and sat down... he looked a little lost not quite knowing what to say. We said, "It's bad isn't it?" and he shook his head... We weren't ready for the next words he said which were, "Her heart is very depressed on both sides, she is much worse off than we anticipated and her time with this heart is measured in terms of months not years as we had thought. Her *Ejection Fraction Rate which was 55 the last time we cathed her here is now 11. She is going to have to be listed for a transplant soon".

As parents, these are not words you expect to hear. We knew that she had to have a transplant, but in shock to hear that it would be months with this heart before she had to get a new one. A day later we went home with Jessica and a few days later we went away on her Make-A-Wish trip to Orlando, Florida.

Life is one day at a time hoping Jessica doesn't get a cold or something that pushes her heart over the edge. We are spending a lot of time trying to fundraise for her to cover expenses that insurance doesn't cover. Oxygen to sometimes help her breathe a little easier and soon a wheelchair to accommodate her since walking takes a lot out of her now. A lot of tears and a lot of prayers and a lot of long distance phone calls to Grandparents and an uncle who are too far away to be seen all the time... and a wish that in a few years from now, we will all be sitting around at some Holiday Dinner or Gathering and looking at our daughter who pulled through the worst times in all our lives, and she'll have that same beautiful smile on her face that we have come to know.