Jessy was born to us as a blue baby! She spent 3 days in neonatal ICU with the diagnosis of transitional stress syndrome. Until October of 1998 we thought we had a healthy little girl with the exception of "activity induced asthma". Jessy loved to run and play as does every child but she would quickly become short of breath and her lips and fingernails would turn blue.

On the morning of October 23rd, 1998 she woke up very early and appeared to be having a full blown asthma attack and was taken to our local hospital. Within hours she was transferred to a Children's Hospital in upstate NY. Her oxygen levels were critically low and even with 100% pure oxygen, they were not responding. By Saturday morning a decision was made to place her on a ventilator.

The doctors did some tests and found that Jessy has a 9mm Ventricular Septal Defect (hole between the two lower chambers of her heart) and that because she had been living this way for a full 6 years she had acquired irreversible Secondary Pulmonary Hypertension. Even trials of a gas called Nitric Oxide which is not FDA approved and used in cases of "compassionate care" would not lower the pressure in her lungs. Because her blood flow through the heart and lungs was abnormal, her body had done its best to compensate for this.

After 6 days, she was weaned off the ventilator. Her oxygen levels at this time were 87-88 % on three liters of oxygen. Normal for most people is 98-100 % without oxygen. At this time, the doctors could not close the hole in her heart due to the damage to her lungs. The only possible way to correct this is for her to have a double lung transplant and closure of the hole at the same time.

In July of 1999, after being seen by doctors at Children’s Hospital in St. Louis, we were given 3 options:

1) we could do nothing and she might live to be a teen.
2) we could do a double lung transplant and repair the defect in her heart, which would open up a whole new spectrum of possible complications and the 5 year post transplant survival rate is 50%.
3) we could try to delay the progression of the illness with a continuous infusion of a medicine with a pump through a permanently placed catheter in her chest to help to dilate her blood vessels.

We choose option 3.

By 2004, Jessica had been on her continuous infusion for 5 years and those five years had for the most part included many hospitalizations, mainly related to infections in the catheter in her chest which required it to be replaced several times. When she was home, she did pretty well, was able to go to school and do what she liked best, socialize…LOL! Her cardiac catheterization was showing that her pulmonary pressures were slowly beginning to increase and that we needed to seek out interventions regarding her medicines from a specialist.

In November 2004, Jessica was being followed by Dr. Jim White who specializes in pulmonary hypertension and has an office within an hour of our home…per his recommendation Jess was transitioned to a newer form of the same medicine she was on. There were many advantages to this... she no longer needed a catheter in her chest, so no more worries about infections. This medicine was also a continuous infusion, but it infused through a tiny needle into her abdomen, the pump for it is about the size of a cell phone whereas the old pump she had to carry weighed about 5 lbs. Jess was able to go to school more frequently, and more importantly, because this medicine is less complicated and more stable, she was able to do more social activities without her dad or I needing to be right there with her at all times. That year, for the first time ever, she has gone to friends parties, school dances, and spent the night at friends houses.

In 2006, Jess did very well with her new medicine regime and her most recent cardiac catheterization showed that she was maintaining well. She was able to go to school much more frequently and even gone to some after school activities. She had a very active social life and loved to spend time either on the phone or computer chatting with her friends.

In 2007, Jess continued to do well with her current medicines. She loved the freedom and the ability to be more socially active. Her favorite things to do included going to the park, going to the mall, and going to school dances with her friends. Since July 30th, Jess has had some tragedy to deal with, one of her favorite cousins died as the result of a small farm tractor accident. He was 23 and very much a “big brother” to Jess. He also was a good father to his little girls. Jess loved to spend as much time as she could with the girls and loved to take pictures of them, I think it helped her to deal with her grief.

2008, for the most part, had been another fairly uncomplicated year for Jess. She had also become very good at her latest “hobby”. She loved to take pictures with her digital camera and had taken some really nice scenery shots. Her favorite things to photograph though were her friends and her cousins babies. Jess enjoyed spending time with her little 2nd cousins.

But on November 26th, 2008, Jess was admitted to the hospital after being taken to the emergency room due to severe abdominal and back pain. A CAT-scan showed her pain was due to internal bleeding which formed a large sac of blood surrounding her right kidney. We had no knowledge of any injury that led to this, however, she had been on blood thinners because of her heart defect since she was diagnosed in 1998. Because of the risk of further bleeding, she was transfused with 4 units of FFP (Fresh Frozen Plasma, a blood product) and given Vitamin K to counteract the effects of the blood thinner she had been on. Jess was discharged home on December 5th, and at that time there was no sign of any further bleeding and she just needed to limit her activity.

During the month of December 2008, Jess spent most of her time on the phone and computer talking with her friends and had been on large doses of pain medicine to control the pain caused by the blood surrounding her kidney. Some of her friends even stopped in to visit and brighten her spirits.

Sadly, on December 25th, 2008 at 12:06am, as a result of complications related to her illness and her medications, Jessica went to Heaven to receive her halo and wings and become our “Christmas Angel“. While she had recently had some medical issues, her passing was totally unexpected.

I thank our Heavenly father that her passing was quick and peaceful, she was not in any pain nor did she cry or show any signs of fear. As her dad said, we helped her when she came into the world and we helped her to leave. Jessica was a spirited, compassionate, and loving young lady and she touched many lives with her outgoing and cheerful personality as was attested to by the attendance of over 400 friends and family at her funeral service. I pray that God gives our family the strength to cherish her memory with love and that He will lovingly watch over her until the day that we can be reunited with her in Heaven.