How do you mend a broken heart? For Jaden Nickel, it took the latest technology, faith and love
NORTH BRANCH -- Last Saturday, Jeff and Tina Nickel and their young daughter, Jaden, spent the day at the Mall of America, participating in the American Heart Association's annual Heart Walk and raising money for a cause they feel strongly about.
Next Saturday will be the observance of an even more momentous occasion -- Jaden's 2nd birthday -- an event that will no doubt be celebrated with much fanfare and doting on the part of her parents, grandparents and great-grandparents. Although the Nickels now live in North Branch, where Jeff works for American Family Insurance, most of their extended family lives in the Worthington area, including grandparents Jim and Deb Nickel, Daryle Albersman and Leslie and Dan Jensen.
Jaden Louise Nickel was born March 11, 2004, with a heart defect -- endocardial cushion defect -- that includes multiple complications. The problem was initially detected while Jaden was still in the womb.
"At our 20-week ultrasound, the one where most parents find out if it's a boy or girl, we found out a little bit more," recalled Tina. "We were at the clinic, and the doctor said there was something wrong with the baby's heart, but they didn't have the technology to identify it. They sent us over to the heart center at the St. Cloud hospital, where they did a Level 2 ultrasound and echocardiogram."
Endocardial cushion defect is a broad name for many complications, but in this case, it meant that the left side of the baby's heart didn't develop correctly and the ventricles weren't properly divided. The specialists determined that nothing needed to be done until the baby was born, although it was considered a high-risk pregnancy, and Tina underwent frequent ultrasounds and echocardiograms to monitor the baby's well-being.
"I was in shock. We were both scared," said Tina. "Being first-time parents is scary enough, but not knowing what was going to happen when she was born, that was frightening."
When Jaden finally arrived, precautions were taken, including having a helicopter on standby and a specialized team in the delivery room. But none of the anticipated complications occurred; Jaden didn't even present a heart murmur. Although they were told that the infant would require surgery down the road, the Nickels were presented with a baby who appeared to be healthy.
"They told us we could take her home right from the hospital, as if she were a healthy newborn," Tina remembered. "We were to bring her to the pediatrician, and we had an appointment with a cardiologist. I think we were in denial that she could go into heart failure. We assumed we were just waiting for surgery."
When she was a few weeks old, Jaden appeared to be catching a cold.
"She sounded congested. I would hold onto her back, and it was just rattling, but she didn't seem to be stuffed up, and she wasn't running a fever," Tina said. "I was nursing her, and she would fall asleep within a couple minutes of starting to feed her. So I brought her to the pediatrician, and they did a chest X-ray that showed her lungs filling up with fluid. Three days later, she was admitted to the University of Minnesota for the first time."
Jaden weighed 9 pounds, and the doctors wanted her to be at least 12 pounds before they attempted surgery, so they spent a week stabilizing the baby.
"At this point, we were very, very scared. When they said heart failure, we were just devastated. We had been in denial about that," Tina admitted. "We brought her home, and then two days later, a cardiologist from the university called and said a surgeon had reviewed her tests and said they couldn't wait any longer for her first surgery."
So, on April 12, 2004, weighing just 8 pounds, 8 ounces, Jaden had her first open heart surgery. It would be the first of multiple surgeries for Jaden and the beginning of a rollercoaster odyssey of highs and lows, triumphs and setbacks for her parents. Jaden would spend months in the hospital while her parents waited to see if the repairs to Jaden's tiny, but misconstructed heart would work. After several failures, the specialists determined a different approach was needed.
"They told us we either had to list her for a heart transplant or by the knowledge and talent of our surgeon and St. Jude's (children's research hospital), they would design her a prosthetic valve to fit in her heart. Because of the anatomy of her heart, a regular valve wouldn't fit in there," Tina related. "We weighed the pros and cons of each and decided that (the prosthetic valve) would be the way to go. You never think you're going to have to decide something like that, but there would be no turning back after taking out what was there."
The valve replacement was scheduled for Sept. 8, 2004. Not long after the surgery was done, it became apparent that Tina and Jeff made the right decision.
"There were some bumps on the road -- she needed time for recovery -- but within a few weeks she was off the ventilator, and then on Nov. 13 she was discharged," Tina recounted. "The prognosis is good. If all goes well with her growth, when she is 4 or 5 years old, she will need that valve replaced for a bigger one. They're hoping to put in an adult-sized valve so she won't need another surgery. She'll be on Coumadin (a blood thinner) for the rest of her life, but hey, five years ago, she wouldn't be here at all."
Just as the Nickels thought their major troubles were behind them, Jeff began to suffer some health problems of his own.
"One month after Jaden was discharged, Jeff started having chest pains," Tina explained. "He was ultimately diagnosed with testicular cancer that had spread to his abdomen and lungs. He had his first surgery Jan. 3 (2005) and then went into four cycles of chemo. He had his last surgery in May, and that took care of it. He's now cancer free."
Although Tina said they've had their moments of asking "Why us?" she and Jeff have done their best, with the support of faith, family and friends, to maintain a positive attitude throughout these struggles.
"That's just life," she said. "Things happen to people. We just got it all at once. People say there are reasons for everything, and it's hard to see how a reason can come out of this. But they're here, and they're healthy, and we wouldn't want it any other way."
The Nickels feel strongly about organizations such as the American Heart Association and the American Cancer Society, because without the strides that have been made through research, their lives would have suffered much more heartbreak. During last weekend's Heart Walk event, Tina and Jeff proudly sported shirts that said "A Mended Heart is a Special Heart," and their entourage raised close to $4,000 for the AHA. They also plan to take part in the ACS Relay for Life.
Tina is grateful that at her young age, Jaden will have no traumatic memories of her multiple surgeries and lengthy hospital stays. She describes her daughter as "an extraordinarily happy girl."
"We ask her where her heart is, and she points to her chest," she said. "We're just playing catch-up with her developmental skills. She's becoming more vocal, which is great because there was a time when we weren't sure because we couldn't hear her cry. She had a vocal chord injured from being on the ventilator."
The Nickels hope their lives will be less eventful in the future, but say that the experiences of the last few years have also made them better people.
"We don't take anything for granted," Tina said. "Our time together is very precious."