Guest Blogger: Don Weisman, Hawaii Government Relations Director
For a parent, there may be no greater fear than losing a child.
Wojo and Cari Ann Csigi, of Waihee, experienced that loss in 2011 when their infant son Shayden died from complications related to congenital heart defects. Now they are finding solace through their support of the American Heart Association whose work includes efforts to improve outcomes for babies born with heart defects.
Shayden was born on July 19, 2011 six weeks pre-mature. After experiencing early signs of labor, Cari Ann called Kaiser Permanente, her medical provider and explained her symptoms. She was told to go immediately to her doctor who then had her transferred to Maui Memorial Medical Center. After an hour there, she was told that she would be transferred by air ambulance to Kaiser’s Medical Center on Oahu.
“My doctor explained to me that if I gave birth on Maui, my baby would be flown out to Oahu immediately after birth to receive the advanced care needed because he was pre-mature,” said Cari Ann. “I cried the whole plane ride over. Wojo met me and we were taken to Kaiser Moanalua Medical Center.”
“As I was wheeled into the operating room for a C-section I was super nervous, anxious and scared, but those feelings disappeared when I heard my baby boy cry for the first time,” Cari Ann continued. “Because he was six week premature, they had to take him immediately to the neonatal intensive care unit. When I finally got to hold him two days later he instantly stole my heart.”
“We were told that he may need to stay in the hospital until his original birth date. As the days went by, the hospital staff told us that Shayden was doing well and that he might be able to come home sooner. Then within three days of what we thought would be his release date, were told that they had discovered that Shayden had a heart defect and that he would have to be flown to San Diego for surgery as soon as possible. Everything happened so quickly.
Shayden had been diagnosed with a potentially life-threatening defect called aortic stenosis, a narrowing of the main artery carrying blood flow out of the heart to other organs in the body. In San Diego, he would undergo five different procedures, including two open heart surgeries. Following those procedures, doctors there were concerned that Shayden’s heart function wasn’t improving and suggested a transfer to Lucille Packard Children’s Hospital at Stanford. Wojo and Cari Ann, nervous and afraid, made the drive to the Bay area.
Shayden spent the next three and a half months at the Stanford Medical Center. In the first week he underwent a third open heart surgery. Two weeks later he went into cardiac arrest.
“That was the scariest day,” Cari Ann explained. “His blood pressure dropped, his heart rate dropped, his color changed; I thought that I was going to lose my baby that day. After 12 minutes of CPR they were able to revive him, but he was never the same after that.”
Cari Ann and Wojo said that many up and down days followed. Shayden went through additional procedures to try and improve his condition. He contracted an infection in October and Cari Ann and Wojo were told that he might not recover, but the infection cleared. Kyra and Cari Ann’s mom were then able to visit for two weeks, the first time that Kyra and her parents had been together since their being in California.
“That was the best two weeks,” said Cari Ann. “I was so happy to finally spend time with my baby girl and my mom. Kyra got to spend time with her little brother. It was super hard to see them leave.”
One week later, Shayden contracted another infection. This time doctors sat Cari Ann and Wojo down and told them that they needed to prepare themselves and their family for the worst.
“Thanksgiving week was a really rough week for Shayden,” remembered Cari Ann. “As the days went by he began retaining fluid and got weaker. On Thanksgiving night, Wojo and I decided that it was time. While we still wanted to give Shayden every chance we could, we knew that he was telling us that he was ready to go.”
“The next day, our nurse called early and said that he was more swollen than he had ever been and that they had to increase his sedatives and turn up the rate of his ventilator to help him breathe. We got ready and went straight to the hospital.”
“When we walked into his room, I could see how swollen he was. Tears rolled down my face. We talked with our nurse and had the doctor, social worker and chaplain come in. Slowly they turned off the pumps for his medications and feeding. I got to hold him for a little while.”
“Throughout the day and night we watched as Shayden’s blood pressure and heart rate elevated then dropped, but he hung on. The hospital staff came in and talked and listened to music with us. It helped us to not feel so sad. At 1:23 a.m. on Saturday, Shayden passed. I think he was comfortable in leaving us. He could hear us with the others and knew that we would be OK. The staff let us give him a bath and put clothes on him. We got to hold him for a couple of hours, then it was time to say goodbye.”
“Losing Shayden was hard on our entire family and his memory is something we’ll carry with us the rest of our lives,” explained Wojo. “After his death, getting involved in supporting the American Heart Association has helped us to heal a little bit.”
Cari Ann’s and Wojo’s support for the American Heart Association has included organizing a team to participate in the Heart Walk event. They have also become members of the organization’s grassroots advocacy network called You’re The Cure, helping to support state legislation to improve methods used by Hawaii hospitals to screen all newborns for congenital birth defects using a technique called pulse oximetry screening. They submitted testimony sharing their story and the bill progressed through the House and Senate, but failed to pass in conference committee after language from another, unrelated bill, was added to it.
“Heart defects are the leading cause of birth defects and it comforts us to know that we’re working to help support other families deal with those challenges,” said Wojo. “Each year, about 20 percent of all the funds that the American Heart Association raises through its events is reinvested back into research, some of which is helping to continually improve the treatments available for those babies, as well as in helping to treat other cardiovascular diseases. A large portion of the funds raised also helps to improve health in our communities by helping to prevent cardiovascular diseases and stroke. By supporting the American Heart Association, it helps us to keep Shayden’s spirit alive.”
“Shayden is our super hero,” added Cari Ann. “Shayden taught us that no matter how tough life gets, we need to be strong, we need to love and we need to keep going. There is not a day that goes by that we don’t think about Shayden. He will forever be in our hearts and minds.”