Despite Williams Syndrome, Ahnalysse Veazey is set to dance through life

Kaily Veazey, 32, of Abbeville, La., had a long-time, nagging feeling when it came to getting pregnant. “What if I can’t conceive?” “What if we try and I miscarriage?” So Kaily, 32, and her husband, Christopher, 33, decided to wait until they felt they were ready. They prayed on it, she said, and it finally “all fell into place.”

Kaily’s pregnancy was going well; she was feeling fine and the couple were getting ready for their baby girl when ultrasound testing revealed their baby might be struggling in utero. Their fears were allayed for a bit, but then her doctor said the baby wasn’t meeting growth milestones.

“At first we were told the baby was doing great. She was just tiny,” Kaily recalled. “Then the ultrasounds showed she wasn’t growing enough.”

At 37 weeks, when an ultrasound revealed the umbilical cord was wrapped around the baby’s neck twice, it was time for Kaily’s baby to make her entrance into the world. Though she wanted a natural birth, it wasn’t to be. It turned out the cord was wrapped three times around the baby’s neck and once around her little body. So, after a speedy Cesarean section, Ahnalysse Rose was born on Feb. 17, 2022 – weighing 4 pounds, 5 ounces and measuring 17.5 inches.

Incoming Diagnoses

Kaily and Christopher brought their beautiful baby girl home five days after she was born. Ahnalysse was born with a small systolic heart murmur, mom explained, “but the doctor said she would grow out of it.” However, at her three-month visit, the family’s pediatrician confirmed the heart murmur was “getting louder,” Kaily said.

A month later, soon after her baptism, Ahnalysse was evaluated by a local pediatric cardiologist.

“I knew something was very wrong. They kept doing test after test. There was so much activity. I just knew we were about to hear a scary diagnosis,” Kaily continued.

And she was correct. The baby was born with supravalvular aortic stenosis (SVAS), a heart defect that develops while the baby is in utero. Babies born with this condition have a narrowed large blood vessel that carries blood from the heart to throughout the body.

“Hearing our baby girl had a heart condition was bad enough. But we were also told that babies with this condition typically have a birth defect called Williams syndrome,” Kaily said.

Williams syndrome (WS), associated with developmental delays and often medical challenges throughout the body, is a rare genetic disorder that occurs in about one in 8,000 births. Babies with WS have both genetic and neurological factors which often affect social and emotional skills development.

At this point, Kaily’s memories of all of her “what if’s” started to flood her mind. She said she and her husband were so frightened and knew Ahnalysse needed to be seen at the best children’s hospital in the area. They immediately made an appointment for both genetic testing and cardiac care at Children’s Hospital New Orleans – a three-and-a-half-hour drive from home.

“We were so focused on the thought that our baby needed immediate heart surgery,” Kaily said. “But when we met with Thomas Kimball, MD, (Director of the Heart Center and Division Chief of Cardiology at Children's Hospital New Orleans), we heard wonderful news. He said Ahnalysse was stable, and he wanted to allow her to grow bigger and stronger. We were so relieved.”

“Dr. Kimball is amazing. He has been with us through this entire process. He has been very upfront and very informative,” mom said. “He gave us all the information and material we needed along the way. We never left there with questions.”

The genetic testing done at Children’s Hospital New Orleans, as the parents feared, showed the baby did have Williams syndrome.

According to the Williams Syndrome Association, which celebrates Williams Syndrome Awareness every May, people with WS may suffer developmental delays and learning challenges. People with WS also have certain personality characteristics, distinctive facial pixie-like features, and like Ahnalysse, heart and blood vessel problems. One in 8,000 babies are born with WS, the association reports.

Time for Surgery 

For the next year and a half, Ahnalysse’s WS symptoms became a bit more obvious to Kaily. She wasn’t meeting certain milestones. But mom and dad were focused on the eventual heart surgery. Finally, on April 25, 2024, congenital heart surgeon Frank Pigula, MD, performed the surgery to correct the aortic stenosis. Dr. Pigula is the Chief of Pediatric Cardiothoracic Surgery and Co-Director of The Heart Center at Children’s Hospital New Orleans.

“Ahnalysse did so well,” Kaily said. “Dr. Pigula was a godsend to our family. He saved our baby’s life. He came to talk with us the day before surgery and prayed with us right before surgery. He was so patient, so compassionate, so informative and explained exactly what he was going to do. He was so confident about how the surgery was going to go. With all the fears I still had, I knew, in that moment, God was speaking to us through Dr. Pigula. He was letting us know that our baby was going to be just fine.”

Finally, after a short stay in Children’s Cardiac Intensive Care Unit, Ahnalysse was ready to go home.

Terrific Twos

With her heart condition in the rearview, Ahnalysse is getting ready to give her parents a run for their money. Lucky for this family, this little girl may not experience the “terrible twos” but instead the “terrific twos,” as the silver lining of Williams syndrome is that those who have it are highly sociable and appear to be quite happy most of the time.

In fact, according to the WS Association, people with WS show “striking verbal abilities, have highly social personalities and an affinity for music.”

Autism and Williams syndrome are sometimes spoken about in the same way, as they are both genetically based neurodevelopmental disorders. However, while autism impairs social communication, people with Williams syndrome are extremely sociable and quite engaged with their surroundings and other people.

Kaily can attest to the upsides of this condition. “Ahnalysse is thriving. She is walking and running, eating and loves to play with her toys,” mom said. “She is talking more every day and mimicking everything we are doing and saying. I don’t think she even missed a beat. In fact, I feel like her development has advanced.”

This little girl loves to watch television, listen to music and dance. Mom said she will start shimmying to any sounds at any time. “She smiles and laughs all the time and she gives the best hugs. She is a little super hero and the most joyful person you will ever meet,” Kaily said.

This little girl will be followed closely by a geneticist going forward. “We’ve been told that she may have developmental and cognitive delays, slow motor skills and maybe a hard time with test taking. Time will tell,” she added. “For now, Ahnalysse is imperfectly perfect. Milestones really don’t matter. She is going to do amazing things in her life. She is exactly who God set her out to be. Even through all the battles, we are blessed to have her.”

For more information about the Heart and Vascular program at Children’s Hospital New Orleans, please visit: https://www.chnola.org/services/heart-center/heart-center-programs/

For more information about the genetics program at Children’s Hospital New Orleans, please visit:

https://www.chnola.org/services/genetics/