With Thanksgiving right around the corner, many of us will spend some time counting our blessings, which we tend to overlook in everyday life. We all are guilty of going about life’s daily routines—getting to and from work; shuttling kids to school or football, basketball or dance practice; trying for a home-cooked meal, then off to bed before another day begins—without appreciating the fragile, uncertain nature of life.
For the Claxton family of McCaulley, life’s fragility is never forgotten, and every moment of every day is a blessing.
When Kevin and Takara Claxton (formerly Takara McCarter) married in 2015, they knew they wanted a family and were overjoyed when they learned in late 2017 that they would be parents. Their joy soon was tested, however: Eight weeks into the pregnancy, their doctor thought he heard a skip in the baby’s heartbeat, which was confirmed at the 16-week ultrasound.
“When we first heard [about her heart], Dr. Daniell told me, ‘Don’t stress,’ ” Takara said. “I prayed and kept the faith. I had to.” Once a heart problem was confirmed, Takara said, “ ‘OK. What’s our next step?’ I worried a little bit but not as much as most people.” At 24 weeks, it became clear that the issues with their baby girl’s heart were more serious than previously thought.
The couple were referred to a team of fetal cardiology specialists at Cook Children’s Medical Center in Fort Worth. One of the cardiologists told Takara, “Honey, you might not get to keep her.”
The doctors diagnosed the baby with heterotaxy syndrome, a complex condition that the National Library of Medicine defines as the abnormal arrangement of internal organs in the chest and abdomen. Each case of heterotaxy is unique and can lead to a variety of severe congenital heart defects, which was the case with the Claxtons’ baby.
“We were hopeful to get to 29 weeks,” Takara explained. “I was fine until we got in the car. I cried for two days, but then I gave it to God. I prayed to God every day. I talked to Him and to my baby a lot.” The fearful expectant young mother prayed but also prepared for the worst. “I had thought of her casket, flowers, even the dress that we would bury her in.
“Jaisley Pearl would be her name,” Takara said. “Kevin and I wanted something different that you don’t hear, and we also wanted to somehow include his brother in her name.” Kevin’s twin brother, Jeremy, passed away in 2012 at the age of 19. “So, her initials are JPC, just like her uncle—Jeremy Paul Claxton,” Takara said. “The ‘-ley’ part of her name is a tribute to Jeremy’s best friend, Nick Lee Walker, who also passed away in 2012. For her middle name, we wanted something old-fashioned, so we chose Pearl, which also happens to be her birthstone.”
Each day of Takara’s pregnancy past 29 weeks gave tiny Jaisley a better chance of survival after birth. Although she wasn’t due until July 26, Jaisley’s heart rate dropped June 4, and Takara was admitted to the hospital. Eight days later, June 12, at 33 weeks and five days gestation, baby Jaisley made her entrance into the world.
At a tiny 4 pounds, 9 ounces and 17 inches and with a head full of red hair, she was small but mighty. “I really didn’t get to see her but for just a second before they whisked her to the cardiac intensive care unit,” Takara said. “I couldn’t wear my glasses or contacts for the C-section, and then I had blood pressure issues, so I literally didn’t see her for 28 hours.”
The family said their faith guided them through those tough first days. Jaisley was born with a complete atrioventricular canal defect with interrupted inferior vena cava and a complete heart block. She also had no spleen. Shortly after birth, she was fitted with an external pacemaker. Medications and oxygen were administered and adjusted continually, and Jaisley received dialysis. She grew and thrived under around-the-clock care.
“Weaning her off morphine was hard—she would shake and was very sensitive to light and noises,” Takara said. On August 17, Jaisley’s permanent internal pacemaker was implanted—in her belly because there was no room in her tiny chest—and just one week later, she was discharged to go home. It was a blessing that her parents thought they might never receive—and, sadly, one that other parents whom the Claxtons befriended at Cook Children’s could not share.
“We got close to a family from Louisiana, whose baby was diagnosed at two weeks old. She didn’t make it,” Takara recalled. “It’s sad and it’s tough, but I was so impressed with the doctors and nurses. Another little girl [was admitted] who’s had issues before—and they jumped into action, sometimes doing eight- or nine-hour surgeries unexpectedly.”
After a month at home, life has changed for Kevin and Takara and is much richer now that Jaisley is at home with them. Every parent knows the seemingly endless array of luggage that a baby requires, but Jaisley’s parents also tow around a backpack with a heart rate monitor and pulse oximeter as well as a Medtronic pacemaker reader, which transmits data to an app on Takara’s cellphone.
“She has a big personality,” Takara said, beaming proudly at her bundle of joy who, at 3 months old, now weighs more than 8 pounds and hates her car seat. “In just over a week, she grew a half inch! She sleeps for about three hours at a time and is up at about 4 or 5 o’clock each morning. She’s a music lover. When I was pregnant, I’d play music close to my belly. While she was in CICU, we left an old cellphone with Pandora music playing by her bed—she likes everything and gets moody if you turn her music off!”
Like many babies, Jaisley already has several nicknames. “Bitties, Lil’ Bit, Sweet Pea,” Takara listed, noting that her little princess is loved and cherished by her mom, dad, grandparents, great-grandparents and a host of aunts, uncles and cousins.
What does the future look like for Jaisley? She has an excellent prognosis but is still on medication and likely will be all her life, but other than that and some physical restrictions, Jaisley is expected to be a normal, healthy, active girl, and probably “more than a little spoiled,” Takara admitted. “She won’t ever be able to do anything in which she could get hit in the belly,” Takara said. “No riding horses or an ATV, but she can ride a bicycle if especially careful. She can’t ever have an MRI, but X-rays are OK. As she gets older, I want to teach her to have a positive body image. Sure, she has scars, but these scars are how we got to keep her.”
On November 14, Jaisley will enter the operating room once more, this time to repair her congenital heart defect, as she was too small for that surgery when her pacemaker was implanted. “She will be in the hospital for a week or two after surgery, depending on her pain level, eating and general response to the surgery,” Takara said. “Hopefully, this will be her last procedure, other than having batteries in her pacemaker changed. Dr. Roten also thinks that she’ll be able to come off oxygen after this surgery.
“Several people have said, ‘That’s awful to be stuck in the hospital on Thanksgiving,’ but I honestly can’t think of a place I’d rather be,” Takara said, noting her anticipation for visiting with the many nurses and doctors who took such good care of Jaisley. “We’re just so thankful for her. There is so much to be thankful for.”
If you would like to follow Jaisley’s journey, search for Jaisley Pearl on Facebook.