Every child is precious but when they are only moments old and fighting for their life they become the most precious thing your heart can hold. We discovered that fact on February 5, 2008, the day Christine was born. It was a confusing and overwhelming experience, one moment there was joy that she had arrived and the next fear because we learned she wasn’t breathing correctly. Born in Searcy, Christine was immediately air lifted to Children’s Hospital in Little Rock where they were better equipped to help her fight. It was not the beginning we had envisioned for her and it hurt that she was taken away before her family even had the opportunity to hold her.

Our precious baby was diagnosed with two heart defects that were preventing her from receiving the oxygen she needed. Thankfully the doctors assured us that these were correctable problems. Three days later her tiny body underwent heart bypass surgery. Nothing can prepare you for the sight of a newborn lying under sedation and waiting for such a procedure but we had hope and we waited for good news. A Total Anomalous Pulmonary Venous Return (TAPVR) and a Ventricular Septal Defect (VSD) were both repaired on February 8, 2008. Christine had come through with a strong will and now had a stronger fully-functioning heart. Recovery began immediately but it was a slow process, a repeating litany of tests and assessment. Her family was still prevented from holding her, but we watched her fight and grow stronger. After five weeks in the hospital Christine finally came home ready, we hoped, to start her happy life with her loving family.

A few months later we received the bad news. Christine had developed scar tissue. A second bypass surgery was necessary. She returned to Children’s Hospital on July 31, 2008 and the tiny problematic section of her artery was removed. As a five-month old Christine was better able to bounce back than she had been at four days of age and her stay was an amazingly short five days. She came home again, but this time there was less hope that the ordeal was over.

Ten percent of children born with TAPVR develop Pulmonary Vein Stenosis. Christine was in that ten percent, the scar tissue that had grown would continue to reappear as a result of this condition. This new diagnosis meant Christine now faced a new life threatening procedure. Pulmonary Vein Stenosis is a narrowing of the blood vessels, specifically in Christine’s case, the vessels leading to her lungs. The condition will cause Pulmonary Hypertension and eventually lead to a heart attack.

The doctors in Little Rock specialize in pediatric cardiology. That had been a happy coincidence when she struggled with heart defects in her first few days of life, but now she needed a different kind of doctor. The Children’s Hospital in St. Louis has a concentration of pediatric pulmonologists and so Christine took a trip to Missouri. After more tests and assessment it was decided that Christine is a candidate for a lung transplant. The terrifying procedure is the only way to prevent the eventual results of Pulmonary Hypertension.

The diagnosis can be hard to accept when you meet Christine. She is the happiest baby! A smile is her constant expression. She loves music and will entertain you all day with her dancing and antics. Her ordeal seems to have instilled in her a quiet but resilient spirit that makes her content no matter where she is or what is going on around her. Her condition makes her small but her petite size holds a large and joyful personality.

Today Christine is in a holding pattern, she must undergo assessment every few months to gauge her lung function and oxygen levels. Her test results remain fairly constant meaning that for now she is stable. However, there is much to do to prepare for the eventual transplant she will require. The costs of such an operation are staggering and insurance only covers so much. Luckily there is help for Christine.

The Children’s Organ Transplant Association (COTA) is a national non-profit organization that has agreed to help our baby. Since 1986 they have helped families raise millions of dollars to pay the expenses of surgeries like Christine’s. They are truly a philanthropic organization as one hundred percent of all funds raised are used for those transplant related expenses. COTA provides “Team Christine” with ideas, knowledge and support to implement fundraising efforts. 

It is our hope that the fundraising and informational events held for Christine in the near future will provide the type of financial benefit to guarantee that when her surgery is finally necessary that the costs do not prevent her from undergoing the life saving transplant. We hope that as word spreads friends and neighbors will visit the website or attend an event and contribute to the effort. Until the day that the surgery can no longer be avoided we will enjoy every moment with our precious, happy little girl.

Written by: Sara Kay Jordan (Christine's Aunt)