Rare conjoined twins who survived separation surgery, despite just a two percent chance of survival, have graduated from kindergarten.
Mom Heather Delaney, 33, from Statesville, North Carolina, learned at just 11 weeks pregnant that she was carrying conjoined twin girls. Doctors told her the chance of having craniopagus twins—connected at the head—was one in 2.5 million.
The babies had a low chance of survival but fought against the odds. Twins Abby and Erin were born by cesarean section at 30 weeks on July 24, 2016, weighing 6 pounds (2.7 kilograms) combined.
Ms. Delaney and her husband, Riley Delaney, 30, a landscape foreman, were thrilled despite their daughters having to remain in the neonatal intensive care unit (NICU) at Children’s Hospital of Philadelphia (CHOP)—10 hours from home.
In June 2017, the girls underwent a rare, pioneering procedure to separate their skulls and, despite the risks, the 11-hour-long operation was a success. Although both girls have developmental difficulties, they are thriving now as they approach their seventh birthday.
Proud parents Mr. and Ms. Delaney watched their girls graduate from kindergarten in June—a milestone doctors doubted they'd ever reach.
Ms. Delaney said: “There are days now where I sit back and think ‘I can’t believe how incredibly lucky we are.’ Yes, they have disabilities and things they’re working through, but they’re so happy.
“Watching them graduate, it was like we were dreaming. It’s one of those things where you feel like it'll never come.
“We don’t yet know what they can accomplish so the sky is the limit for them.
“Although they don’t remember, they see photos in the house of when they were conjoined.
“One day we'll sit them down and talk about it properly—we want them to be proud of who they are and where they’ve come from.”
Years ago, Mr. and Ms. Delaney were full of fear when they learned they were having conjoined twins and that their girls might be candidates for separation surgery once born. Ms. Delaney was admitted as an inpatient from 27 weeks but went into labor naturally at 30 weeks.
“When we first found out we went into shock first, we had no idea what to think,” Ms. Delaney said. “It’s something you only see on TV, I thought this doesn’t actually happen to people.”
Abby and Erin shared a skull, skin, and their superior sagittal sinus—a critical vessel that carries blood away from the brain. They had to remain in the NICU in Philadelphia until their separation surgery in June 2017. The separation surgery would be the first of its kind to ever go ahead at the hospital due to the rarity of the girls’ condition.
It also had risks, ranging from mild brain damage to death, and the girls had several minor surgeries to prepare ahead of their separation. On the day of the surgery, the parents could do nothing more than “keep praying really hard” as the surgeons got to work. Following the grueling 11-hour procedure, the parents said it was “touch and go” with Abby in particular, who lost a lot of blood during surgery.
Ms. Delaney said: “Abby lost 10 to 15 times her blood volume, we were told. They replaced her entire body’s worth of blood several times when the surgeons had to clip her sagittal sinus to separate her from Erin. They had a hard time stopping the bleeding afterward. The surgeons actually told us they had never given that much blood to a patient in one go before and the patient had survived.”
Post-surgery, they both had to remain hooked up to machines in the hospital while they stabilized.
Erin fared a little better than Abby, who required a cocktail of medications as well as support because she started having seizures.
“I definitely remember the day after the surgery, I didn’t sleep for two days,” Ms. Delaney said. “When everything finally settled about 48 hours after the surgery, and there weren’t 15 to 20 people in the room at all times, I was finally able to take a breath.”
It took five months before both children could finally be discharged from the hospital to return to their Statesville home. Both little girls have intellectual disabilities, meaning their development is slower.
Approaching their seventh birthdays, Ms. Delaney said currently the little girls are developmentally around the 15-month mark. They are both currently non-verbal, but Erin has been walking since she was 5, and now Abby is starting to walk too.
They go to mainstream school, but in a special class to get support for their needs, and Ms. Delaney says they’re thriving. They graduated from kindergarten in June, a milestone the parents could have never dreamed of when the twins were babies.
At their graduation, Erin got a “dolphin award” for her “adventurous heart” and love for exploring. While Abby was given the “deer award” for being a “gracious friend who treats all people in a gentle and kind way.”
“Before their separation, there hadn’t been many of that kind done anywhere in the world,” said the proud mom. "So there wasn’t much to look at that was good before the surgery—it was definitely scary.
“Now look at them—I’m so proud of them both.
“It has always been our goal in sharing our story to try and reach any other parents faced with the same type of pregnancy we were, to give them hope. We want to show there is the possibility they can be separated and then lead healthy and happy lives.”
