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Home / Lifestyle

Twins joined at the head: Life after incredible separation

By Lindsey Bever
Washington Post·
26 Oct, 2017 07:51 PM5 mins to read

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The surgery on the 10-month-old conjoined twins, Abby and Erin Delaney, took place on June 7th 2017. Source: CBS Philly

Abby Delaney can roll onto her stomach, hold up her head and turn pages in her favorite 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 said there have been rewarding but "terrifying" moments as the 15-month-olds recover.

Left: Heather Delaney holds conjoined twins Abby and Erin. Right: Riley Delaney holds the girls after their separation surgery. Photos / Children's Hospital of Philadelphia, Washington Post
Left: Heather Delaney holds conjoined twins Abby and Erin. Right: Riley Delaney holds the girls after their separation surgery. Photos / Children's Hospital of Philadelphia, Washington Post

"I know that when you see stories of conjoined twins being separated it's so exciting and everyone is so happy," Heather Delaney wrote Sunday in a blog post. "I wasn't able to have that moment for a while."

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But, she said, the twin girls are making tremendous progress and are preparing to head home.

Delaney provided details Sunday about the Mooresville, North Carolina, 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."

Learning the girls were conjoined

Delaney and her husband, Riley, learned that their daughters were conjoined last year when Heather Delaney was about 11 weeks' pregnant. Delaney started travelling to Pennsylvania, later moving to a unit at the Children's Hospital of Philadelphia for mothers carrying babies with complex congenital conditions.

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On July 24, 2016, Abby and Erin Delaney were delivered prematurely by C-section, each weighing about 900g, 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 past 60 years but never a pair of craniopagus twins, those who are connected at the head.

How conjoined twins form

For identical twins, an embryo splits in two early in a pregnancy. But for conjoined twins, the embryo does not separate all the way and the twins remain connected, according to the University of Maryland Medical Centre. Conjoined twins are uncommon, occurring once in about every 200,000 births - and craniopagus twins are the rarest form, accounting for about 2 per cent of all conjoined twins, according to the medical centre.

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"This is one of the earliest separations of craniopagus conjoined twins ever recorded," Jesse Taylor, a plastic and reconstructive surgeon at the Children's Hospital of Philadelphia, said. "We know that children heal better and faster the younger they are, therefore our goal for Erin and Abby was separation as soon as possible with minimum number of surgeries."

Additional surgeries

The twins will need more surgery over the next several years to replace missing bone on top of their heads and help mend their hairlines, according to the hospital.

Delaney recounted the twins' recovery in the heartwrenching 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," Delaney wrote. "The worst part is everyone keeps asking if you are ok. That's when you know things aren't good. When you have person after person asking if you're ok, if they can get you anything, trying to hug you or pat you on the back to offer some support. It's moments like that were you just want everyone to go away and leave you alone.

"All you want to do is will your child to get better because that is all you can do."

Adjusting to the outside world

Delaney said the twins have made strides. Soon after their 1st birthday they started rehabilitation - learning how to sit up and play with their toys.

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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.

"Each time it is heartwrenching because I know it is a setback," Delaney wrote on her blog. "Whenever they aren't in rehab getting their therapies it is a setback as to when we can go home. And poor Abby just can't seem to catch a break. She has had a respiratory virus three times (Erin twice, me once), Erin had the flu (Abby and I escaped that one thank God), and then just this past week Abby got a weird blood infection that caused her to go into septic shock, landing her yet another stay in the ICU. This last one scared me I am not going to lie."

Erin was discharged from hospital this month, her mother said.

"Abby still has a little ways to go 'til she is able to be discharged," she added. But she said after a few more weeks of rehab, "hopefully, God willing, we will be headed home for the holidays!!!".

Delaney called her young daughters "inspiring".

"As their parents, it is very neat for Riley and me to have a front row seat to this and watch them overcome these incredible obstacles," she said. "We cannot wait to see what their future holds."

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