Family Celebrates Baby's Miracle Recovery from Heart Surgery
When she learned she was pregnant at the five-week mark, Kelleigh Flynn was excited about having a second child. She and husband, Dan, and their 2-year-old son, David, couldn’t wait to complete their family with a new baby.
At age 37, Kelleigh knew from the start that it was going to be a high-risk pregnancy. She was feeling great and eagerly went in for an anatomy scan at the midway point of her pregnancy.
When they got the results of the test, there was great news and frightening news. They found out they were having a baby girl! But, at the same time, Kelleigh’s baby was diagnosed in utero with a severe ventricular septal defect (VSD) – a hole in the heart that occurs in the wall between the heart’s two lower chambers.
While this congenital heart defect is not a particularly uncommon heart problem, Kelleigh said she and Dan were “terrified” when they heard the news.
“We were told we had to meet with a genetic counselor. My high-risk OB was concerned about the possibility the baby had a trisomy disorder. But she didn’t and finding that out was a huge relief,” Kelleigh said.
Medical Team Devises Plan to Fix Clara’s Heart
Kelleigh and Dan, who live in New Braunfels, were referred to CHRISTUS Children’s Lea Porche, MD, a maternal fetal medicine specialist. She picked up the abnormal cardiac anatomy, and, in turn, referred them to CHRISTUS Children’s Cardiologist Monesha Gupta, MD.
“Dr. Gupta is the one who diagnosed the hole in my baby’s heart. She had me undergo a comprehensive cardiac ultrasound; “it revealed my baby girl had complex congenital heart disease. My baby girl had one instead of two ventricles. The ventricles are the two main chambers that pump blood out of the heart,” Kelleigh said.
“At least eight of every 1,000 infants born each year have a heart defect,” according to the American Heart Association, which also noted that single ventricle heart defects are one of the most complex heart problems and usually require at least one surgery.
Clara's Birthday
Kelleigh gave birth on Nov. 14, 2023 – only three days before Clara Louise was due to be born. OB-GYN Jillian Lopiano, MD, delivered Clara via C-section. Clara weighed 7 pounds, 14 ounces, and measured 18.5 inches long.
Since Dr. Gupta diagnosed Clara with a ventricular inversion, tricuspid valve stenosis and hypoplastic aortic valve with interruption of the aortic arch, Kelleigh knew she would undergo heart surgery soon after birth. “She looked perfect, and you wouldn't have known anything was wrong,” Kelleigh recalls, noting the idea that her baby would undergo heart surgery six days later was daunting.
Norwood Procedure
And, as expected, Clara had what’s known as the Norwood procedure – open heart surgery wherein a pathway was created to allow for blood flow.
“I was scared but I had confidence in Victor Bautista-Hernandez, MD, PhD, a top thoracic and cardiac surgeon at CHRISTUS Children's. He had performed the Norwood procedure many times and he made me feel like everything was going to be OK,” mom said. “He even told us that CHRISTUS’ Level IV NICU was the very best place in the country for our little girl to recuperate after surgery. When he told me that, I just knew in my heart that everything was going to work out in the end.”
Kelleigh said she and Dan felt comfortable from the start knowing they would get excellent care at CHRISTUS. In turn, skilled physicians took their turn at making sure the Flynn’s newborn received outstanding care from delivery to surgery to NICU recuperation.
After Clara was born, Dan got to hold his “very alert and looking around” little girl, before a medical team “whisked her off to the NICU so she could start the medication she needed that would protect her heart until her surgery,” Kelleigh said.
On Nov. 20, at only 6 days old, Clara underwent the Norwood surgery at the skillful hands of Dr. Bautista.
“I was scared but I had confidence in Dr. Bautista. I knew he had performed the Norwood surgery many times before and he made me feel like everything was going to be OK,” mom said. “He even told us that CHRISTUS’ Level IV NICU was the very best place in the country for Clara to be after surgery. When he told me that, I just knew in my heart that everything was going to work out in the end.”
Nurses Keep Parents Updated During Baby’s Surgery
During the surgery, which took several hours, Kelleigh was receiving constant updates by text. “We were in a waiting room, but I knew that everything was going according to plan. I’ll admit, I have never been so terrified in my life. But having the nurses telling me what was going on made such a difference,” mom said. “After the surgery was over, Dr. Bautista came and talked to us. I started to cry when he told me that Clara was going to be OK.”
A few days after her open-heart surgery, Clara’s chest was closed on Thanksgiving Day and Kelleigh said she knew then that her family had so much to be thankful for that day and every day afterward. Two months and one week later, on Jan. 23, Kelleigh and Dan took their newborn home to meet her big brother David.
“David wants to see her all the time. He keeps asking to ‘pet’ her,” Kelleigh said laughing. “But he is learning how careful he needs to be with his baby sister. He knows how delicate she is, and he is great at cleaning his hands all the time, especially when he comes home from preschool.”
Family Prepares for Glenn Procedure
In a few more months, Clara is expected to have a second surgery known as Glenn procedure; at this time Dr. Bautista will replace the original shunt with a bigger one. Between three and five years of age, Clara will undergo a third surgery (hopefully her last), Kelleigh said.
In the meantime, Kelleigh admitted that “life is pretty intense.”
“I’m playing both mom and nurse since Clara has a G-tube for feeding,” she said. “I am constantly worried about her and am living at a high anxiety level. But I know she is doing well, and every day gets us closer to the day when she can have the G-tube removed.”
NICU Team Creates Loving Environment for Baby and Mom
Maria Pierce, MD, neonatologist and perinatal specialist, met with Kelleigh often while Clara was in the NICU. “She kept telling me how my baby was thriving and how much she was growing,” mom said. “Every time I saw her, I was getting good news, and it was so great to hear.”
Further, the NICU nurses were incredibly supportive, she said, noting “they kept telling me I was a good mom and was doing a good job – and there were days I really needed to hear that. All the NICU nurses were great, and they were always on top of everything Clara needed. Also, they took care of me and taught me how to do everything for her.”
These days, Clara is very alert and responsive. She is full of big smiles and is very interested in her surroundings.
“What do I think about when I think of her future? I think she will grow up to be a normal little girl. I see myself laughing at her sitting in her highchair at 6 months old making a mess when she is playing with her food,” Kelleigh said. “I picture her at 2 years old, running around and chasing after her brother. I’m looking forward to all of that. She will be healthy, and my family will be complete and happy.”
Learn more about the Heart Center, Maternal Fetal Medicine, or the Level IV NICU at CHRISTUS Children's.