S-P-I-R-I-T, spirit! She’s got spirit!
Sixteen-year-old Danielle Riley, a junior varsity cheerleader at Montabella High School, has taken the meaning of spirit to a new level.
This spirit carried her through more than a dozen major surgeries, three scopes and 12 dilations of her esophagus, eight cardiac catheterizations, six barium swallows, six bouts with pneumonia, two upper GIs and one scope of her lungs.
She has two steel rods along her spine to correct scoliosis, six pingpong balls in the cavity where her left lung was removed and pins in her arm from a broken elbow. A life filled with adversity, yet this amazing young girl faces each day with a positive attitude and is an inspiration to everyone she encounters.
Complications at birth
Danielle was born three weeks early at Helen DeVos Children’s Hospital in Grand Rapids with three major abnormalities.
• Tracheoesophageal fistula (TEF) with esophageal atresia: Basically, Danielle’s esophagus did not develop properly and only came part way down the chest and stopped. Instead of being attached to the upper section of the esophagus, the tube from the stomach had attached to the trachea (tube going to the lungs).
When she was just one day old, doctors performed surgery to detach the esophagus from the airway and reconnect it to the upper section. Danielle couldn’t be mouth-fed and received formula via a feeding tube until she entered kindergarten.
At six months old, Danielle required outpatient therapy at Mary Free Bed Rehabilitation Hospital in Grand Rapids to learn to eat by mouth. The feeding tube remains today and is used to administer medicine and night-time feedings.
• Duodenal web: This defect causes a blockage in the upper small intestine that prevents food from traveling to the intestines. When Danielle was less than three weeks old, doctors performed a surgical procedure to bypass the blocked area.
• Tricuspid atresia: This rare congenital heart disease, occurring in 5/100,000 live births, caused blocked blood flow from Danielle’s right atrium to her right ventricle due to an abnormally formed heart valve. She also experienced fatigue, blue discoloration of the skin, shortness of breath, rapid breathing and poor growth.
As an initial staged approach to major heart surgery, Danielle had two surgical procedures before she turned one year old. Major reconstruction of the heart (Fontan) was performed just prior to her 12th birthday.
A tough decision
Just before Danielle turned 12 years old, her parents, Mike and Tracy Riley, had a tough decision to make — proceed with a heart/lung transplant or have the Fontan operation, an aggressive procedure developed in the 1970s by Dr. Francois Fontan.
Doctors at Spectrum Health DeVos Children’s Hospital were not certain the Fontan was the right choice for Danielle and didn’t do transplants. The family consulted with the University of Michigan Hospital in Ann Arbor, but their insurance plan did not participate with that medical facility.
Next, the Rileys traveled to Detroit Children’s Hospital. After days of testing and doctor consultations, they had to choose between the Fontan surgery and the heart/lung transplant.
“This was a very stressful time for us as a family,” said Tracy. “The doctor to perform the surgery offered to pray for us, which helped with making our decision. He said the results of the operation would be because of God’s will, not the hands of the surgeon.”
After months of anguish and prayer, the Rileys opted for the Fontan surgery. On Sept. 24, 2007, after a five-hour operation, the blood pumped out to Danielle’s body bypassed the heart and was redirected directly back to her remaining lung.
Her left lung was removed during surgery after doctors discovered its function was diminished to the point it was a hindrance. Six pingpong balls were placed in the empty lung cavity.
The surgery gave Danielle new life. With better heart and lung function, she gained more stamina. The oxygen tank and motorized scooter were no longer needed on a regular basis.
Danielle’s health improved after the Fontan surgery. However, she recently developed protein losing enteropathy (PLE), a complication of the surgery.
PLE causes protein from the blood serum to enter the intestinal tract. The resulting low protein levels create fluid accumulation in the abdomen, ankles and shins.
Danielle takes Lasix to control fluid retention. Poor food absorption also poses risk for other serious infections. To address the PLE issue, Danielle’s parents plan to consult heart specialists at The Children’s Hospital of Philadelphia.
Happy Sweet 16
Danielle celebrated her 16th birthday on Oct. 28. No doubt, Danielle has endured a great deal in her short life.
Today, she takes 13 different medications, sees seven different doctors, uses the feeding tube for added nutrition and contends with frequent bouts of fatigue and acid reflux.
Danielle says her biggest challenge is combating fatigue. With just one lung, she requires frequent breaks throughout the day.
“There is not a problem that I can’t deal with, though,” Danielle explains.
Her mom, Tracy, helps her get through the hard stuff.
“My mom is the No. 1 person I go to if I am sad or ill,” Danielle said. “I know I can tell her anything. I can trust her with issues from missing homework to surgery scares. She is my closest friend.”
Danielle has come a long way. Her dream is to be a fashion designer someday.
“If you were to go into my room, you would see all the wedding dresses I have drawn,” said Danielle. “I am starting to draw other types of dresses. My friend at school also draws dresses, so we like to show each other our dresses.”
Surviving it all
As the parents of a child with extensive medical needs, Danielle’s mom expressed gratitude and appreciation for the great support system.
“Our family, church family and friends were and are a great source of support for us,” Tracy Riley said. “They have been by our side every step of the way but there is only so much they can do. To help us deal with what we are going through mentally, we turn to the Lord in prayer. Every step of our journey has been blessed by his will, and we continue to be thankful for what he has provided for us.”
Correspondent Robin Miller is an Edmore resident.