All the Way from North Carolina

LPCH Repairs Isabella's Heart

As told by Celeste Bailey, Isabella's Mother
Lucile Packard Foundation for Children's Health's Packard Children's News Winter 2004 Issue
 
Home Page Photo:  Grant Roberson, The Wilson Daily Times
Four days after Isabella was born, her doctors told us she had a hole in her heart.  She was also missing a pulmonary valve, and instead of the normal pulmonary artery coming out from it, she had just some tiny veins.
 
She had to have surgery or she would die, they told us.  Isabella's problem was so rare that only a few doctors had ever done surgery to repair it.  Dr. Frank Hanley at Lucile Packard Children's Hospital (LPCH) had done the most and was the one our doctors recommended.
 
By September 2003, at 5 months of age, she seemed old enough to have the operation.  My husband doesn't like to fly, so we drove three days across the country from our home in North Carolina, with the baby and her 4-year-old brother in tow.
 
Over the phone before we left, Dr. Hanley explained what he hoped to do. He would try to form one large artery out of the little veins. Then he would try to find the hole in her heart and put in a valve if the pressure was not too much.
 
On the morning of the surgery, we kissed Isabella goodbye at 7:30 and didn’t see her again until 9 that night. It was hard, but a strange coincidence gave me comfort while we waited.  A family from Canada was there to pick up their little girl and take her home.  This girl, it turned out, had the same heart defect as Isabella.  Canadian doctors had tried to fix it but failed, and had concluded that she would die.  But her parents refused to give up.  They found Dr. Hanley through the Internet, and he operated on the girl a couple of weeks before we came.  By every indication, she was going to be fine.
 
The report on Isabella was mixed that night, however. Dr. Hanley told us he had connected the veins and put in a shunt, but it would be risky to go any farther with the repair.  After another year, those newly connected veins might show some growth, and her maturing lungs could accept an increased flow of oxygen-rich blood.
 
She recovered well and was out of the hospital in less than two weeks.  But over the winter and spring, as Isabella grew, her body's need for oxygen got harder to fulfill.  You could tell her oxygen level was dropping – she'd be crawling along and then start breathing really hard.  By April of 2004, she was always tired and wasn't eating well.  Her doctors in North Carolina called Dr. Hanley, who scheduled surgery for July.
 
By summer, she had gotten a whole lot worse.  At 15 months, Isabella had outgrown the shunt.  Dr. Hanley still hoped to finish what he’d started, but the timing would depend on what he saw when she arrived.  None of us, however, knew how long she might live.
 
We drove out to LPCH again, and they immediately performed a catheterization before the surgery to examine the heart tissue and open any blockages.  When we met with Dr. Hanley shortly before the surgery, he looked really happy.  He felt 80 percent sure, he said, that he could complete the repair.
 
At 13 hours, surgery was another long day.  Dr. Hanley came out afterward with a big smile and said, "Isabella has a new heart valve."
 
All I could do was hug him.
 
Today, it's as if nothing was ever wrong with her.  At 18 months, she's walking, she's normal – and she has so much energy.  She loves to pull out all the pots and pans and bang on them with spoons.  She loves to play with the puppies.  She loves to color and read books.  Most of all, she loves to dance.  Whenever she hears music, this girl just has to dance.