In February 2012, Carrie Ford of Queen Creek found herself in premature labor at Banner Desert Medical Center’s emergency room. An ultrasound revealed a devastating diagnosis: twin-to-twin transfusion syndrome, a rare, random disorder caused by unequal blood flow between identical-twin fetuses in utero.
TTTS affects up to 10 percent of identical-twin births. Anomalies in blood vessels in the mother’s placenta result in the “donor” twin having decreased blood volume, leading to abnormal fetal nourishment and development.
By contrast, the “recipient” twin is overloaded with blood, straining the baby’s heart and other organs. In contrast to the beauty and wonder of identical twinship, it is a cruel imbalance that is neither hereditary nor genetic.
The twin girls, born 11 weeks premature, were rushed to the neonatal intensive care unit at Cardon Children’s Medical Center at Banner Desert, where the family’s months-long odyssey began.
NICU doctors gave Ashlyn, the recipient twin, a “zero-percent chance of survival,” because she was in heart failure. A heart transplant was not an option because her condition was not stable. Ashlyn also experienced a brain bleed, blood clots and hydrocephalus.
“We were in shock,” Carrie says. “At the time, all we could really do was pray.”
Isabel required many blood transfusions but was the more stable of the two. Still, the ebb and flow of the sisters’ conditions at any given moment left the Fords feeling that the girls were on a rollercoaster.
“When one was stable, the other was crashing,” Carrie recalls.
In the midst of rapidly unfolding events, Carrie and Nathan were experiencing their own conflicted feelings. Here they were, first-time parents with two babies. One was semi-stable, but the other was so critically ill they felt the need to spend as much time with her as they could. It was possible her life would be measured in mere minutes.
Much revolved around Ashlyn’s grave condition those first few days. The couple called upon the pastor who married them to give Ashlyn the final blessing.
“We didn’t know if she would survive,” Carrie says.
Multiple surgeries
Dr. Jonathan Greenfeld, pediatric surgeon and chair of the department of pediatric surgical specialties at Cardon, performed the first surgery on Ashlyn on the second day of her life. Ashlyn was too critical to be moved to an operating room, so her personal area — or “pod” — was closed off to accommodate a bedside surgical unit. Greenfeld inserted an IV line needed to administer nine medications to her heart.
“Dr. Greenfeld described to us what could happen and what the odds [of Ashlyn’s survival] were — that she was very, very sick,” Carrie says. “[He] always took time to call us or to answer questions. He cared beyond his profession.”
Greenfeld wanted the Fords to understand what they were facing.
“As difficult as it is, I feel that parents like the Fords who have a child with a life-threatening condition deserve to have the clinical situation explained to them honestly and frankly,” he says. “I also want them to know that the team of individuals caring for their kids does so out of a deep-seated commitment.”
Greenfeld also operated on Isabel, removing a dead portion of her intestine. Although Ashlyn’s complications were severe, it was Isabel who ended up staying longer in the NICU — 136 days — because of her gastric challenges, which take more time to resolve and were the cause of her early touch-and-go days. Greenfeld, whom the Fords affectionately call “Dr. G.,” performed seven of the many surgeries performed on the twins.
Carrie can recite an entire list of Cardon specialists and nurses who kept her babies alive. The entire staff was “great at keeping everything in perspective,” Carrie says. “They didn’t give us false hope.”
But as the days turned into weeks, any hint of improvement, no matter how small, gave the Fords the tiniest bit of hope.
Going home
When Ashlyn was finally able to go home, Carrie remembers how hard it was to leave Isabel in the NICU. The rollercoaster continued.
“When Ashlyn stabilized after brain surgery, Isabel struggled to make it through intestinal procedures and had lots of ups and downs trying to tolerate food,” she says.
Still, after Ashlyn’s 108 days in the NICU, it was helpful for the Fords to first settle at home with her to establish as normal a routine as possible before Isabel’s homecoming. They called the NICU when they needed advice. When Isabel finally joined her family, she came home with an IV for fluids. The staff found a social worker to work with them and scheduled all the twins’ follow-up appointments.
Ashlyn and Isabel share an unmistakable bond as identical twins, but their parents had some concerns that their rough start in life would affect their relationship.
“It was worrisome when the twins were born and then separated immediately,” Carrie says. “They weren’t together for four and a half months. You worry about that bond.” Isabel was in the NICU a month longer than Ashlyn and had started to withdraw. When the Fords opened the door to her room, she would turn away.
One moment gave them hope that all would be well between the siblings. After Nathan took Ashlyn for a walk in the stroller around the NICU during a visit with Isabel, the parents put the twins at eye level.
“That was the first time we saw both of them smile,” Nathan recalls with emotion.
Writing their own story
TTTS has affected the twins, who turned 4 in February, in different ways. But both girls have made steady progress since they started preschool at age 3.
Isabel started to improve socially, thanks to early intervention and occupational therapy to deal with her fear and anxiety. Bonding therapy and the daily structure of preschool have also helped improve Isabel’s behavioral and sensory issues.
Ashlyn, who has cerebral palsy as a result of brain damage at birth, is learning how to improve her fine-motor skills and physical strength. She struggles with feeding and drinking issues, everyday mobility and basic self-care. She uses a tiny walker and wears special glasses. Her teachers have adapted areas at school to help her be successful among her peers.
“We’ve converted our dining room into a therapy room for Ashlyn to work on getting stronger,” Carrie says. “My husband builds furniture, activity spaces and therapy equipment to help her reach her goals.”
An essential component of Ashlyn’s treatment is intensive twice-annual, three-week physical therapy sessions in California. It’s not easy for the family to be separated. Carrie accompanied Ashlyn for her June session and reports that the little fighter “shows great bursts of improvement after each session.”
The girls have learned to swim, and Carrie is exploring hippotherapy (therapy with horses). Isabel is her sister’s constant motivation — and Ashlyn is always trying to surpass limitations.
These are enormous accomplishments for two little girls who started life on the edge of death. Ashlyn’s grimmer prognosis was that she would never be verbal, never eat by herself, never crawl or walk.
“We’ve just ignored that from the beginning,” Carrie says. “Our families say the girls will just continue to write their own story.”
Carrie left her job as a sixth-grade teacher to care for the twins. Nathan continues to work at Costco, where he has been employed for 12 years. Both are eager to find some semblance of normalcy for their young family.
Ashlyn, who is in the care of 10 specialists, has three to seven appointments each week, 30 to 40 minutes from home. Keeping up with insurance, paperwork and research on the best doctors and intervention strategies can be exhausting. The Fords visit Carrie’s family in Connecticut every year; they made their first successful trip with the twins at 18 months.
Their advice to parents facing the challenges of critically ill infants?
“Stay positive,” Nathan says. “That’s what Carrie was really good about. It was crazy to see how positive she could be. I was always more scared, but she was always finding the good things. That was pretty awesome; it got us both through.”
Carrie advises focusing on one day at a time.
“It can go from amazingly well to amazingly hard,” she says.
Giving back
Carrie volunteers at Cardon as chairwoman of the NICU’s parent advisory board, which hosts monthly events for families of children in the neonatal intensive care unit. She also helps with book drives and the Totes of Hope program that gives NICU families a pick-me-up.
She organizes family breakfast or dinner “receptions” and planned a special gathering during National Nurses Week in May.
“The volunteering fills a space in my heart that was kind of broken. It feels good to be helping others,” she says.
Dr. G is amazed at the twins’ progress — especially Ashlyn’s.
“Both of them are doing wonderfully,” he says. “It is heartwarming to see.”
“It’s great for us to bring them back [to Cardon],” Carrie says. “After every appointment, Ashlyn’s doing more and more. It’s nice to be a story of hope. We didn’t give up.”
Above each of the twin’s beds are special sayings that fit them to a T.
For Ashlyn: “She believed she could, so she did.”
For Isabel: “Though she be but little, she is fierce.”
Related: Will’s Hope helps families with unexpected expenses of childhood illness.
