On the road to recovery
Conjoined twins in U.S. survive one of world’s rarest surgeries
Feeling helpless was the new normal and I hated it.
Abby Delaney can roll onto her stomach, hold up her head and turn pages in her favourite books.
Her sister Erin can now sit up on her own and she is starting to think about crawling — learning to hold herself up on her small hands and knees.
More than four months after the formerly conjoined twins were separated in a rare surgery at Children’s Hospital of Philadelphia, their mother says there have been rewarding, but “terrifying” moments as the 15-month-olds recover.
“I know that when you see stories of conjoined twins being separated it’s so exciting and everyone is so happy,” Heather Delaney wrote Oct. 22 in a blog post. “I wasn’t able to have that moment for a while.”
But she said the twin girls are making tremendous progress and are preparing to head home.
Delaney provided details about the Mooresville, N.C., family’s long, emotional journey since her daughters’ birth.
“I know we took a while to share pictures and share more of the girls’ story,” she wrote in the blog post. “We just wanted them to be well and the stress to calm down before we let the world back into our lives.”
Heather and her husband Riley learned that their then-unborn daughters were conjoined last year when Heather was about 11 weeks pregnant. Heather started travelling to Pennsylvania, later moving to a unit at the Children’s Hospital of Philadelphia for mothers carrying babies with complex congenital conditions.
On July 24, 2016, Abby and Erin were delivered prematurely by C-section, each weighing about two pounds, and doctors started putting together a plan to try to separate them, according to the hospital.
Nearly a year later, on June 6, about 30 doctors, nurses and other medical personnel worked for 11 hours to separate them — untangling blood vessels and separating the brain’s outermost membrane and the sagittal sinus, which carries blood to the heart, according to the hospital. The hospital said at the time that it had separated 22 other pairs of conjoined twins over the last 60 years, but never a pair of craniopagus twins, those who are connected at the head.
With identical twins, an embryo splits in two early in a pregnancy. But with conjoined twins, the embryo does not separate all the way and the twins remain connected, according to the University of Maryland Medical Center. Conjoined twins are uncommon, occurring once in about every 200,000 births — and craniopagus twins are the rarest form, accounting for about two per cent of all conjoined twins, according to the medical centre.
The twins will need additional surgeries over the next several years to replace missing bone on top of their heads and help mend their hairlines, according to the hospital.
Heather recounted the twins’ recovery in the heart-wrenching blog post. The mother posted pictures showing the infants tangled in a mess of tubes and wires, recalling moments her knees went weak, such as when Erin would stop breathing and her heart rate would drop, or when Abby would scream and her tiny body would start shaking because her brain was bleeding.
“Feeling helpless was the new normal and I hated it,” Heather wrote.
She said the twins have made strides. Soon after their first birthday they started rehabilitation — learning how to sit up and play with their toys.
But it has not been easy. In addition to continuing their rehab and recovery from surgery, the girls have been battling illnesses as their delicate immune systems adjust to an outside world.
Earlier this month, Erin was discharged from the hospital, her mother said. “Abby still has a little ways to go till she is able to be discharged,” she added.
Heather called her young daughters “inspiring.
“We cannot wait to see what their future holds!”