FINALLY APART, BONDED FOREVER
The amazing journey of conjoined twin girls
Heather and Riley Delaney still remember the day they found out they were pregnant in January 2016. “We were so excited,” says Heather. The couple counted down the days until their first ultrasound, when they would see their growing child and hear the baby’s heartbeat for the first time. But just a few minutes into the appointment, they could tell by the look
on the doctor’s face that something was wrong: They were having twins – but they were conjoined. “We were stunned,” says Heather. “It was awful. But we knew in that moment we would go through the pregnancy no matter what. I just didn’t think it was my place to decide if they lived or died.”
On July 23, 2016, Heather went into labour two months early, and following an emergency C-section, she delivered twins Erin and Abby, each weighing in at just over 900 grams [2lbs]. “It was the scariest moment of my life,” she says. “I didn’t care if they were ever separated; I just wanted them to pull through.”
While conjoined twins are rare to begin with, Erin and Abby were craniopagus twins – meaning they were fused together at the top of their head, a condition occurring only about six times in 10 million births. To give them the best chance at a normal life, doctors at the Children’s Hospital of
“We can’t imagine our lives without them now”
—Heather Delaney
“There was a strong chance that one of them wasn’t going to make it” —Riley Delaney
Philadelphia told the Delaneys the girls needed to be separated as soon as possible to lessen the risk of severe brain damage.
So on June 6, 2017, after 10 months of planning, consultations and preliminary surgeries, a team of 30 doctors, nurses and technicians performed a successful 11-hour procedure to separate the girls – making the then 10-month-old twins one of the youngest separations ever recorded. “It was very risky,” says lead neurosurgeon Dr Gregory Heuer. “We easily could have lost them.” The tiny girls spent the next two months in intensive care, followed by another two months in inpatient rehabilitation – before finally going home to Mooresville, North Carolina, US, in November 2017. “It lifted our spirits,” says Riley, 26. “We’re so grateful.” Adds Heather, 29: “I can’t imagine our lives without them now. They made our lives complete.”
Needless to say, the journey has been challenging. Riley and Heather say they spent much of the twins’ first year hoping, praying, and leaning on family and close friends for emotional support. While Heather stayed with the babies at the hospital in Pennsylvania, Riley continued working full-time on the renovation team for a retail company in North Carolina, flying back and forth once a month to support his wife and bond with his little girls. To help with travel expenses, mounting medical costs and lost wages due to Riley’s commute, the family created a GoFundMe page (gofundme.com/delaneytwins) that has raised more than $49,000. “We didn’t know what was going to happen and we had no expectations,” says Riley, “but we stuck together as a family.”
Meanwhile, Dr Heuer and his team were consulting on a procedure to separate the girls. Their biggest concern was that the twins shared a superior sagittal sinus – the large blood vessel that carries the majority of the blood from the brain. “A lot of the time, one of the twins who are connected this way dies in surgery,” says Heuer. Yet Heather and Riley managed to stay optimistic. “We put all of our faith into the hands of these doctors,” says Heather. “And they didn’t let us down.”
After the 11-hour surgery, and another few hours in recovery, the girls were finally brought to the paediatric intensive care unit. “When I saw them for the first time it was almost like, that’s just how they’ve always been,” says Heather. “When they were conjoined, I still saw them as their own little people.”
Still, even after the surgery, the girls weren’t out of the woods. Abby lost 10 to 15 times her full blood volume during the final procedure and, at one point, both girls suffered critical bleeding in their brain. “We didn’t know if they would make it,” says Riley. “There were times when one of them would … lose their vital signs. It was tough.” Heather remembers the first time she and Riley left the hospital after surgery – for a quick Father’s Day dinner at a nearby restaurant. “They called a code blue for Abby,” she says. “Her pupils were different sizes, which could mean something is very wrong. It was the one time I’d left the hospital. I ran and cried all the way back.”
These days, there is more joy than there are tears. Erin and Abby are thriving 2-yearolds who have more than enough energy to keep their parents busy. “We feel so lucky,” says Heather. “We don’t take anything for granted.” Three times a week, she takes the girls to developmental therapy sessions to improve their motor, speech and eating skills, and once a week a therapist comes to their home. Erin, who has always been developmentally ahead of her sister, started crawling in July 2018 and will likely start walking soon. Abby has yet to crawl but “is so eager to be independent”, says Heather, “and shows such effort”. Both girls are fed five times a day through a gastrostomy tube in their stomach but are gradually learning how to eat on their own. “Even the smallest thing, like eating a piece of solid food, is a huge deal for us,” says
Heather. “They’re continuing to improve but it’s still hard to watch them not do what other kids their age can.” Adds Riley: “They’re delayed in some ways because of how long they were conjoined but we’re hopeful they’ll make up for lost time.”
For now, every tiny milestone – whether it’s petting the family’s 1-year-old puppy Maggie, learning to pick up a toy, or saying a new word (Erin recently said “dada” for the first time) – is cause for big celebration. “They each have their own unique personalities,” says Riley. “It’s so fun to watch them interacting.” Erin is “very independent” and “a little attention hog”, says Heather, while Abby is “sassy” and “Little Miss Snuggles”.
Of course, they will always share much more than most twin sisters do. “The girls are built-in best buds,” says Heather. “They giggle at each other and enjoy each other’s company.”
While it’ll take time for them to understand the challenges they face, Heather and Riley plan to tell their girls all about their harrowing ordeal. “We want to make sure they know that they’ve come so far,” says Heather. “They’re little fighters and miracles who can do anything they want in life. We always say that maybe they will be brain surgeons one day. We’re going to make sure they live the happiest and brightest lives.”