There are many words Kelly Kennedy uses to describe her 18-month-old daughter, Tenley.
“She’s sassy, independent and very strong willed,” she said. “And she knows she’s cute.”
The fact that Tenley is alive today, though, is truly a miracle. Her journey hasn’t been easy and it has pushed her family into situations they never dreamed of, but the little girl with the big smile and even bigger personality is getting a second chance.
Kelly was 20 weeks pregnant when she was told Tenley had Hypoplastic left heart syndrome (HLHS), a birth defect that affects normal blood flow through the heart. As the baby develops during pregnancy, the left side of the heart does not form correctly, according to the Centers for Disease Control and Prevention.
Essentially, Tenley was born with half a heart. It was devastating news for Kelly and her husband, Jason.
“They said if it went untreated, she would die,” Kelly said. “They said our biggest decision would be whether we wanted this child or not. I wasn’t going to just let her go. We were going to fight for her. ”
They made the decision to move to Houston to give their baby a chance to live. They left Haughton in January 2016 when Kelly was 36 weeks pregnant.
Tenley made her grand arrival Feb. 4. In babies with hypoplastic left heart syndrome, the left side of the heart cannot pump oxygen-rich blood to the body properly.
“She looked great,” Kelly said. “They didn’t know how she was going to look when she came out, but she was pink and crying. She didn’t require any oxygen or anything. They let me hold her for about 10 minutes before they took her.”
Tenley was immediately put on medication. If they hadn’t, she would have died, Kelly said.
Soon after a baby with hypoplastic left heart syndrome is born, multiple surgeries done in a particular order are needed to increase blood flow to the body and bypass the poorly functioning left side of the heart. Tenley had her first surgery when she was eight days old.
The next surgery was at five months old. Tenley went into heart failure multiple times during her stay in the hospital.
“She was just really sick,” Kelly said. “They told us three or four times that she wasn’t going to make it.”
But Tenley pulled through each time. It was determined, though, that she needed a transplant. She was put on the transplant list in January 2017 and Kelly got the word four months later that they had a heart.
“It was 3:10 in the morning when they called,” she said. “I’ll never forget it.”
After 568 days in Houston…three weeks in utero and 416 days in the hospital…Tenley was finally able to come home Aug. 5. In all, Tenley has endured three open heart surgeries, a heart transplant, three days on ECMO (heart and lung bypass machine), countless lab draws, IVs, PICC lines, x-rays, and echocardiograms in her lifetime.
“She’s truly a miracle,” Kelly said.
Since the transplant, Tenley is getting better by the day.
“She has so much more energy and way more sassy than she was before,” Kelly said. “You’d never know she was sick just by looking at her.”
The next step for Tenley is to start occupational therapy, physical therapy and speech therapy. She’s developmentally behind because a majority of her life was spent laying in a hospital bed.
Kelly looks forward to seeing her next milestones….crawling and walking.
“I just want her to live a normal life,” she said. “I want her to be a happy kid.”
The Kennedys will return to Houston in September for a checkup. They would like to eventually meet their donor family, but they must wait six months to a year to even reach out to them.
“One thing I pray for is a relationship with the donor family,” Kelly said. “Their decision has given her a second chance at life. I want them to see her grow up and be part of her life.”
Kelly has documented their journey on their ‘Hope for Tenley’s Heart’ Facebook page. She sends her sincerest thanks the community for their prayers, love and support.
“It’s indescribable,” she said. “The community has been a huge support for us. We were so consumed with what was going on in the hospital, but then we would see people comment and that they were praying for us and we didn’t even know them. That’s the best feeling in the world. It makes you feel so good.”
The American Heart Association is working to build a culture of health guided by their impact goal — to improve the cardiovascular health of all Americans by 20 percent, and reducing deaths from cardiovascular diseases and stroke by 20 percent, all by the year 2020.
This is why events like the Northwest Louisiana Heart Walk are held. Not only does it raise awareness, but it collects needed funds for research.
The American Heart Association funds more research than any U.S. organization except the federal government. Research dollars support scientific studies seeking new discoveries related to causes, prevention and treatment of heart disease and stroke.
This year’s Heart Walk will be held Saturday, Nov. 4, on the LSU-Shreveport Campus. Companies and individuals are encouraged to form teams and fundraise together. Last year, the American Heart Association’s Heart Walk brought 1,500 walkers
together to celebrate the benefits of heart healthy living.
For more information or to register for the 2017 walk, visit www.nwlaheartwalk.org.