National Guard Sgt. honors daughter through Haley's Hearts Foundation
By Master Sgt. Robin Olsen
Special to the Tribune
NASHVILLE -- "Several hours after Haley was born, the doctor came to talk to us and said something was wrong. They were going to call Monroe Carell Jr. Children's Hospital at Vanderbilt to send Angel One to transport her," said Tina Chasse, wife of Sgt. Ryan Chasse, training non-commissioned officer for the Tennessee Army National Guard's Joint Force Headquarters in Nashville.
"Ryan went with her,and it wasn't until one the next morning that he returned to the hospital I was at and broke the news to me."
On May 17, 2005, Ryan and Tina's daughter Haley had been born with a rare heart condition called Ebstein's Anomaly, a defect that occurs early in fetal life when the right chamber and valve do not form correctly. Basically, blood is not properly pumping to the lungs. Their brand new baby would need to have open heart surgery.
"I was in total shock and disbelief. How could they possibly perform heart surgery on such a little heart?" recalled Ryan.
"I was scared because I didn't know if she would make it through the night and I was 50 miles away from her," Tina added.
Haley's parents soon learned a lot about their daughter's heart problem.
"There is a spectrum to this disease, and in some mild cases, it can be unnoticed into adulthood. But Haley's Ebstein Anomaly was extremely severe," said Dr. David Parra, Haley's cardiologist at the children's hospital.
Haley was born looking blue because of her low oxygen levels, he said.
With the new baby needing immediate surgery, the Chasse family was even more on edge because Ryan was only home on leave from a deployment to Iraq to be there for her birth. He would soon have to go back overseas.
"I was approved extended leave, giving me another two weeks stateside. Fortunately, Haley was able to come home the day before I had to leave," explained Ryan.
Over Haley's short five years of life, she endured multiple trips to the hospital for various operations and cardiac catheterizations, "a procedure in which catheters and wires are placed in the heart through veins and arteries, usually from the leg, to record pressure in the heart and vessels as well as to perform necessary interventions like balloon dilations or stent placements to improve overall heart conditions," explained Parra.
Even through all of this, you couldn't keep her spirit down.
"If you ever met Haley, you loved her. There was no way not to," said Suzanne Gaffney, a friend of the Chasse family. "She was very spunky and demanding, but always very loving and thankful for everything."
"Her nickname at pre-school was 'Sassy Chasse;' she was so much fun, out-going, full of life, and so thankful for everything she had or was given," said Tina.
"Haley loved to go to pre-school and hang out with her friends, go to her Nanny's house, and her most favorite thing was eating."
"Her favorite foods were macaroni and cheese, chicken and dumplings, and 'big chicken' (KFC). She loved to play babies and play with her cousin and best friend Mike," she said.
Parra remembers her coming into his office pretending to be upset with him.
"She would come see me in my office and call me names and pretend to be mean, but smile and eventually give me a high five or a hug," he said.
Ryan said one of the family's most memorable times with Haley was a trip to Disneyland provided by Make-A-Wish Foundation.
"Being able to take Haley so that she would experience that was amazing!" he said.
Both parents credited the huge support system they had while going through this difficult time in their lives.
"We are from Trousdale County, a small-town community. Everybody knows everybody," Tina said. "During our stays or any procedure, our community, church, family, friends, co-workers, and strangers prayed for us, brought food to the hospital and helped us pay bills."
"During her last hospital stay, some friends created imprinted wrist bands that said 'Praying for Haley' and sold them for $5 each. All of the money went to Tina and Ryan to use for whatever they needed," said Gaffney.
In June 2010, Haley had surgery to replace her internal pacemaker that had become damaged. "Two days after the pacemaker surgery, they found a huge life-threatening blood clot in her abdominal aorta," explained Tina, adding, "She spent the next three weeks on extracorporeal membrane oxygenation (ECMO) going through several surgeries."
"ECMO is a machine that works as the heart and lung," explained Parra. "Blood from the patient is directed into the machine, which oxygenates the blood and pumps it back into the body. It is very invasive, but allows the heart and lungs to rest and gives them time to heal."
During this stay, the couple realized everyone wasn't as fortunate as they had been.
"When you stay in a hospital, you often see the parents of other children as you pass by their room, in the halls, or on the elevator. You talk about your children and bond with the other families," said Tina.
"There was one parent in particular in the room next door. She was a single mother from Alabama who was there alone most of the time. Her son, Jaxon, also had a heart defect, multiple surgeries and had been on ECMO a couple times. He was born in June and was admitted a few days before us and we became friends."
She added, "Ryan and I would always ask if she needed anything. We realized how we were blessed to have each other, people to call, text, visit, bring food and pray for us."
"We spent a total of 174 days in the hospital during her life," said Ryan. A majority of this occurred in July 2010.
"Haley had many procedures throughout her life: operations, catheterization, long periods in the ICU and hospitalized with chest tubes and IVs," recalled Parra.
"Seeing her in her last days was truly difficult for the family and the team of doctors and nurses who took care of her. She and her family endured all of the these moments with great courage and dignity."
At one in the afternoon on Aug. 2, 2010, Ryan and Tina had to make a decision no parent should ever have to make.
"We had to decide to leave her on the ECMO machine (life support) or take her off," said Ryan. "We decided to take her off and leave it in God's hands so that He would do what was best for her."
"It was so difficult to know that she had taken her last breath and her little heart beat for the last time. But there was also peace, knowing that she wouldn't suffer anymore," he said.
"Holding her hand and watching her take her last breath, and realizing that this was it, my baby girl wouldn't be going home with us, was the most difficult moment for us," added Tina.
Then they had to relay the news to Haley's older brother Heath, that his little sister had passed away.
Haley's Hearts Foundation is born
"We had talked about starting a foundation before Haley passed, and then when it happened, we knew immediately it was something we wanted to do!" Tina exclaimed.
To date, the family has raised over $150,000 and helped more than 200 others financially during times of need.
"We don't have an exact number of people because we don't always get the names or meet the families we help. We supply social workers with gift cards to hand out as needed," she said.
The Haley's Hearts Foundation was established as a charitable organization that donates proceeds to families, patients and hospitals in financial need due to sickness or death. The Chasse family holds two fundraisers each year, a chili supper/winter carnival in February and a Forever 5K Run/Walk in October.
"Haley's story could have stopped with her death and only those of us who knew and loved her would know her story. But Tina and Ryan made the selfless decision to create the foundation and now they help other families and Haley lives on through their work," said Gaffney.
The Foundation donates to Monroe Carell Jr. Children's Hospital at Vanderbilt each year, but it provides support in other ways as well.
"They give gas cards to families who drive back and forth to the hospital! They've helped pay rent and utilities. They even purchased a headstone when the family could not afford it," explained Gaffney.
She added that one of the biggest ways the foundation helps has nothing to do with money.
"Who knows what it feels like to go through all of these things better than someone who has been through them? Tina and Ryan are huge emotional supporters as well," Gaffney said.
The first person the foundation was able to help was Silas Smith, who received a heart transplant in November 2010.
"He had been in the hospital for four months. In March 2011, he was able to go home to the apartment our foundation obtained for his mom," said Tina.
That same year, to honor what would have been Haley's sixth birthday, family and friends got together at the cemetery and released balloons.
"Tina wanted to do something to celebrate, so she purchased 100 balloons and invited family and friends to where Haley was laid to rest," said Ryan.
"Haley was the bravest and toughest little girl I have ever known. She taught me what life is truly about," exclaimed Tina. Haley's older brother, Heath, is now 12. In 2013, the family gave birth to another little girl, named Crimson, who is now almost two years old.
For the Chasse family, Haley's battle for life was a very difficult and stressful time in their lives.
"Losing a child is something you never get over. You just learn to cope with it," said Tina.
The next fundraiser for the Haley's Hearts Foundation will be fifth annual chili supper, which is scheduled for Feb. 28 at Trousdale County High School.
About one of about every 100 babies has some type of congenital heart defect. For more information, visit Haley's Hearts Foundation online on Facebook, Twitter, or at www.haleyshearts.org.
Master Sgt. Robin Olsen is a Public Affairs Officer for the Tennessee National Guard.