Holly’s Story

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Holly’s Story

Holly was born on the morning of May 28, 2002 much to the delight of her family. She appeared to be a perfectly healthy 8 lb. 13 oz. baby girl until doctors informed us later that evening that she had a serious congenital heart defect (CHD).

Holly was initially diagnosed with transposition of the great arteries (TGA), in which her aorta and pulmonary arteries were reversed. Because of this, her unoxygenated blood was not reaching her lungs as it should. She also had a large hole between her ventricles, which is known as a ventricular septal defect (VSD). That night she was rushed to ICU at UAB Hospital. Once there, cardiologists determined that Holly also had some narrowing of her pulmonary artery and valve, a condition known as pulmonary stenosis (PS). They were hopeful that she could have the “switch” operation, in which the aorta and pulmonary arteries would be cut and reconnected to their proper ventricles in order to restore proper blood flow.

Holly was airlifted to Children’s Hospital Boston in the hopes that the “switch” operation could be performed. Once at Boston, further tests revealed that the condition of Holly’s pulmonary artery was worse than expected and her pulmonary valve was completely closed. This condition, known as pulmonary atresia (PA), prevented her from having the “switch” operation. This was devastating news to her family. On June 7th Holly’s surgeon, Dr. John Mayer, placed a shunt between her aorta and pulmonary artery to route blood to her lungs. He also created an atrial septal defect (ASD) to help the unoxygenated blood from the body find a way back to the lungs. We knew that this was only a temporary solution designed to give Holly time to grow. We were told at this point that the Rastelli procedure would be the best one for her, but it was uncertain whether or not she would be a candidate for it.

We were finally able to bring Holly home on June 15th. She had regular visits with her cardiologist at UAB to check her condition and growth. Her oxygen saturation level (SATs) was monitored during each visit to determine how efficiently she was getting oxygen to her body. Following surgery, her SATs were in the upper 80’s. Heart healthy people usually have SATs at or around 100. Holly’s SATs gradually decreased with each cardiology visit.

When Holly reached 8 ½ months we were told that it was time for her next surgery. We were also given the devastating news that she had “very little chance” of being a candidate for the Rastelli procedure. As Holly’s parents we felt helpless. We felt there was nothing we could do for our baby. We then realized that there was indeed something we could do for her. We could pray for a miracle. We also, along with Holly’s grandparents, sent out hundreds of fliers asking others to pray for a miracle. Literally thousands of people all over the world were praying for this miracle for our precious baby.

After watching Holly grow and thrive for the past 10 months, it was very hard to face another open-heart surgery, but we returned to Children’s Hospital Boston on March 24, 2003. Many tests were performed (EKG, ECHO, x-rays, and lab work). On March 25th Holly underwent a heart catheterization to help her doctors determine which procedure they would perform. After reviewing all of the tests, Holly’s surgeon (Dr. Mayer) told us that he was “a little over 50% sure” he could do the Rastelli procedure. We sent out tons of emails and made many phone calls asking people to pray hard that Holly be able to have this procedure.

On March 27th Holly had her second open-heart surgery. A few hours into the surgery, a nurse came out and told us that Dr. Mayer was indeed doing the Rastelli procedure! Our prayers had been answered, and God gave our Holly a miracle! He gave Dr. Mayer the skill to perform this delicate surgery. We are so grateful to Him! We are also very grateful to Dr. Mayer, Dr. Roth (Holly’s cardiologist at Boston), and the many people who prayed for Holly’s miracle!

Holly had a few complications following her surgery. She spiked a high fever (105.3) and developed fluid on her lungs. We again made many phone calls, sent out emails, and updated her Care Page to let everyone know specifically what to pray for. Each time God answered our prayers. There are many risks involved in open-heart surgery, including strokes, heart stoppage, infections, and blood clots. We are very thankful that Holly did not experience any of these.

In doing the Rastelli procedure, Dr. Mayer placed a conduit (artificial pulmonary artery) from Holly’s right ventricle to her lungs. This enabled her to maintain the use of both of her ventricles. The drawback to this procedure is that as Holly’s heart grows, her conduit will not grow with it. Also, the conduit will calcify over time. Therefore, she will have to undergo several heart surgeries throughout her lifetime to replace this conduit.

Dr. Mayer is currently heading up research at Children’s Hospital Boston that could prevent Holly from having to undergo multiple surgeries. Dr. Mayer’s research, known as tissue engineering, would hopefully allow him to grow an artery from Holly’s own tissue. This would eliminate the need for multiple surgeries. It would not only benefit Holly, but it would help thousands of other babies born with heart defects.  It is also believed that this research will benefit adults in need of bypass surgery.

Holly is now a vibrant and happy 9 year old.  She is such a blessing to us, and we are so thankful to God for bringing her into our lives and for all He has done for Holly and for us. We are also very grateful to all of our family, friends, fellow “heart parents”, and kind strangers who are helping us in our mission!

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