Candyce Allen’s twins celebrated their 8th birthdays April 21, and that was eight more than doctors told her the children would have.
Chloe and Kenneth — and Chloe’s identical twin, Cara — weighed less than 4 pounds total when they were born. Cara never left the hospital and died at 10 1/2 months.
Allen, 38, and her husband, Greg, 44, of Heber Springs were married in 2004 and had trouble starting their family. She said an ectopic pregnancy damaged one of her Fallopian tubes, and the other was removed, so they decided to try in-vitro fertilization.
Two embryos were implanted. “We prayed a lot and it took — boy, did it take. My husband teases me that I don’t do anything halfway,” Allen said.
She had her first ultrasound on her 30th birthday, and the doctor told her she was pregnant with quadruplets.
“There were rays of sunshine coming out all over my body,” she said.
Greg hit the wall — literally. Allen said she heard a thud, and Greg had fallen back against the exam-room wall after he heard the news.
“I would just laugh because we had tried so hard to have kids,” she said. “This was a made-for-Lifetime-TV movie.”
It wasn’t the script she would have written, though. One of the babies stopped developing at eight weeks.
“It was hard because, at that point, we didn’t know if we were going to lose the others or what. Everything went smoothly until the 15-week checkup.”
The doctor told her that the girls had twin-to-twin transfusion syndrome — a disease of the placenta in which identical twins share a blood supply. “They said, ‘Your babies are probably going to die,’” she said.
“We were confused. Gosh, I think I cried for days. We tried to find as much support as we could,” she said.
Allen went to Texas to have placental laser surgery, an in-utero procedure for the twins, and it worked.
The babies started to grow and function as they should, but at 21 weeks, an ultrasound showed that she was dilated to 2 centimeters and had a bulging amniotic sac.
“I had to lie with my feet higher than my head to relieve pressure off my cervix. I laid like that on complete bed rest for four weeks in UAMS. My only other option was to go to a hotel next to the hospital and wait it out. My whole thing is, as long as I knew I did everything I could, I’m good with the outcome.”
At 25 weeks, almost to the hour that Allen said the embryos were implanted, she knew something was wrong. Cara was about to be born, and Allen had to have a C-section immediately at the University of Arkansas for Medical Sciences Medical Center.
Cara weighed 15 ounces; Chloe weighed 1 pound, 5 ounces; and Kenneth was 1 pound, 10 1/2 ounces.
“I was pretty prepared because when you are in that situation, they do a lot of talking pretty early on to prepare you. They were tiny; you could see every vein — their skin was so thin — you could just see; everything was exposed. The girls had no hair; Kenneth had hair.”
“You ride that NICU roller coaster,” she said, referring to the neonatal intensive-care unit. After two weeks, the children were transferred to Arkansas Children’s Hospital.
“From the beginning, we knew Cara was having tough time. She was the sickest; she was septic when she was born,” Allen said.
“I drove back and forth to the hospital every day; Greg would come four times a week with me until Chloe came home.”
Chloe was 196 days old when she came home with a feeding tube, oxygen and a pulse-oxygen machine and several medications.
Kenneth, who had many brain bleeds, came home at 316 days with a tracheotomy, oxygen, a pulse-oxygen machine and a feeding tube.
“We knew Cara was sick, and we were told we would never bring her home. I think the staff, they held onto her as long as they could,” Allen said.
Cara was in the hospital 318 days when the decision was made to take her off a ventilator, and the family got to come see her one last time.
“I don’t know how many times they told us she would not make it through the night, so we were very fortunate to have her,” Allen said. “Then we started a whole new journey with chronic kids at home.”
The first four years of the children’s lives, they were at Arkansas Children’s Hospital more than they were home, it seemed, Allen said.
Now the twins are in first grade at Heber Springs Elementary School and doing well. They receive speech, physical and occupational therapies outside school.
Kenneth was diagnosed with cerebral palsy, “but if you saw him, you’d never know,” Allen said. “He is what I call my walking, talking contradiction to science.” She said Kenneth amazes his neonatologist with his progress.
He has a feeding tube and a shunt in his brain to drain cerebral fluid to his stomach. “That’s probably our biggest issue to date,” she said of the shunt.
She said Kenneth is a happy child who skips everywhere he goes.
“Cognitively, he’s fine. He’s got delays, but he can learn. We have to adapt his learning skills. He has straight A’s; the school does a lot of work with him. He is the highlight of everybody there. He is a ladies’ man to the core, and he knows it,” she said, laughing. “He is the most loving child; he just loves to give you hugs and see you smile.”
Chloe has a feeding tube, too, and both children sometimes use oxygen.
“She is a brilliant child; she has been reading the Bible since she was 3,” Allen said. “She loves ’80s rock music — she is her dad’s child. She loves Star Wars and Disney princesses.”
Chloe has said that when she grows up she wants to be a princess or a teacher. “I see her being a doctor or something,” Allen said. Kenneth has his heart set on a career as a police officer or a garbage-truck driver, which Allen said is fine with her. She said she has learned not to hold her children back from their dreams just because of a diagnosis.
Although Kenneth’s challenges can be noticed physically, Chloe’s are hidden, Allen said.
“Her issues are sensory and anxiety issues,” Allen said. “It’s heartbreaking because it’s easier to explain something you can physically see.”
Allen volunteers at Arkansas Children’s Hospital and is on the NICU Family Advisory board, as well as several hospital committees. She serves on a safety and quality committee and gives input to the Arkansas Children’s Hospital Board of Directors.
She also talks with hospital staff about what it’s like for a child to die in the
hospital.
The couple started an award this year in memory of their daughter. The Cara Allen Diamond Award is given bimonthly for outstanding patient- and family-centered care, whether it be a housekeeper or a doctor, Candyce Allen said. A family-advisory committee chooses the recipient. The diamond represents the children’s birthstone.
In addition to her volunteerism at the hospital, Allen also works as much as possible with her husband at their business, Allen Furniture. They took the business over in 2012 from Greg’s father, Max Allen.
“To this day, we say we would never divorce, because who is going to [take care of the children] on their own?” she said with a laugh. “He is the perfect partner for me because he’s very easy-going, and I’m wound tight.”
Allen tearfully said the joy that being a mother brings her is difficult to describe.
“It’s kind of hard to put into words,” she said. “Have you ever just looked at your child and wanted to cry because they are so beautiful? I’m amazed at what all they can do, and they teach us something new every day. They make us so proud because neither one of them should be here by any right.
“But I know they are going to to leave a legacy, just like Cara, that will inspire other kids, inspire other families, inspire other mothers, and to me, that’s a big deal. When people hear our story, I don’t care if they know our names. They will hear: ‘There were these triplets, and they were given no chance.’ Just know it’s possible. Anything’s possible, and when I look at them, that’s what I see.”