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    Sutter Children's Center, Sacramento

    Jill - Heart Transplant Patient Builds Her Own Family After Triumphing Over Condition

    Jill -
    Jill - Heart Transplant Patient Builds Her Own Family After Triumphing Over Condition

    When Jill was born in 1973, she had blue baby syndrome.  Her parents would later learn that she was born with a severe heart defect and was missing both an atrium and a ventricle. 

    She looks back on her life as a child and remembers not being able to ride a bike and having severe headaches. 

    “My mother never limited my activity as a child, because she didn’t need to.  I physically couldn’t do things because of my lack of energy,” Jill said.

    Her young life was full of hospitals, surgery and doctor visits.  At age 5, Jill had a Blalock-Taussig shunt procedure at Sutter Medical Center, Sacramento. At age 11, she had the Fontan heart procedure and at age 14 she had back surgery at another hospital in Oakland to correct an unrelated scoliosis problem.

    The heart procedures she had helped prolong her life and enabled her to go to school with other children, but they never truly fixed her heart.  At age 16, Jill was in severe heart failure, and on January 3, 1990 Jill was put on the heart transplant list.

    By this point, Jill’s health was quickly deteriorating.  She was still attending the local high school, but her strength was fading. 

    “At first I would just pass out at school, and then there came a point where I couldn’t make it through the day.  My mom started keeping me home from school and by the month of May, I don’t remember anything, I was sleeping all day long,” Jill said.

    Jill had regular visits with her pediatric cardiologist, Gregory Janos, M.D.  Because of the distance from her home to Sacramento, Jill was given a transtelephonic monitor to transmit her heartbeat to Dr. Janos over the phone.  Jill was given instructions to record her heartbeat whenever it didn’t feel right.  During the next few months, Jill did this every time her heartbeat felt abnormal, and each time the doctor’s office called back and said her heart rhythm was fine.

    On June 7, 1990, at age 17, Jill’s mom drove her to Dr. Janos’ office for her regular checkup.  The nurse came in and took her heart rhythm and went back out to get Dr. Janos.  Jill was immediately admitted to Sutter Memorial Hospital and was moved up on the transplant list.  Jill’s heart was in arrhythmia and had been for some time.  As it turns out, every time Jill had felt what she thought was an abnormal heartbeat and used the transtelephonic monitor, her heart was actually in normal rhythm, and the normal rhythm she felt was actually arrhythmia. 

    The next day Jill received her donor heart.   Because of her circumstances, Jill was transferred to another hospital to be transplanted.  The transplant procedure was successful and Jill recalls that the first thing she noticed when she woke up from surgery was that her finger nails were pink.  Due to her heart failure Jill’s lips and fingers were always blue due to lack of oxygen and hadn’t been pink for months.

    “The heart transplant was the easiest recovery out of all my surgeries,” Jill said, “I left the hospital after two weeks and felt like a completely different person.”


    Exactly a year after her surgery Jill graduated from high school.  She went on to meet her husband of 10 years, Scott.  Scott was also born with a congenital heart defect, an atrial septal defect. In 1973 when Scott was 7 years old, the year Jill was born; he had the hole repaired at Sutter Memorial Hospital.  Besides a faint scar, you would never know that Scott was born with a heart defect.

    Four years after their marriage, Jill and Scott went back and forth about the idea of having a child.  Before Jill’s transplant she was told she could never have kids, but with her transplant she felt like a whole new person. 

    Jill did extensive research on the risks of heart transplant patients having children.  Unfortunately at the time, there was not a lot of information about it.  Most transplant patients had been older males, so there weren’t a lot of cases to follow. 

    “I spoke to a high-risk obstetrician about the statistics involved, and to me the risks weren’t that much more severe then a healthy woman giving birth,” Jill said, “I felt I was doing better then most patients I meet at support groups.”

    In 2004, Jill became pregnant with her daughter Leah.  Jill loved being pregnant and had a very easy pregnancy.  At her 32-week appointment Jill was put on bed rest due to a low flow of blood to the umbilical cord.  At 34 weeks Jill gave birth to Leah, and even weighing in at 3 pounds 14 ounces, Leah was thriving and healthy.

    Three years later in 2007, Jill became pregnant with Nolan.  At her 20-week appointment they performed an ultrasound where they noticed something that needed to be looked at more closely.  They sent her to see Stanley Wright, M.D., a pediatric cardiologist who specializes in fetal and pediatric echocardiography.  Dr. Wright informed Jill that Nolan had a hole in his heart.  Nolan was delivered at 37 weeks, weighing in at 5 pounds.  At 4 months of age, he had surgery to correct the hole. Now nearly three years later, he is running circles around his older sister.

    “My whole life has been based around medical miracles,” Jill said, “and Sutter has been there for me and my family every step of the way.  I am so happy we are a part of Sutter.”

    Jill is currently the member coordinator of Hearts Of Hope, a non-profit organization for children with heart defects. She also volunteers at the Golden State Donor Services.

     

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