The Delaney Twins: Progress Report

After a prenatal diagnosis, the Delaney twins were born in July 2016 at CHOP's Garbose Family Special Delivery Unit. At 11 months of age, they were separated during a long and complex surgery. In all, they spent 485 days in the hospital. Now 2½ years old, they are home and making amazing strides in their growth and development. When the girls are 3–5 years of age, the surgeons will bring them back to the operating room for skull reconstruction and additional plastic surgery.

Transcript

The Delaney Twins: Progress Report

Heather Delaney: It's been almost a year-and-a-half since separation, which is crazy; it feels like it was still yesterday.

Conjoined twins Abby and Erin Delaney were separated on June 6, 2017 during an 11-hour surgery at Children's Hospital of Philadelphia.

The girls, now more than 2 years old, are at home in North Carolina and making amazing progress, with parents Heather and Riley by their sides.

Heather: They are doing so good. Seems like every week they're doing something new and exciting, and just to watch them do that is really fun.

Erin has just started crawling, and she is a little crazy person. She crawls faster than any child I've ever seen crawl. She's also starting to pull herself up on things. And Abby is finally sitting, which is a huge thing. You know, you don't know if they're going to walk until they're sitting. So that was a big one for us.

They talk a little bit, they say like mamma and dada and they're starting to have more advanced babble. And it's fun in the morning because I'll listen to the monitor when they wake up and you hear them almost going back and forth and chit-chattering with each other. It's really cute.

Erin loves music. Any time music comes on, she starts kicking her feet and she gets really excited. And Abby is a people person. She just loves to sit on somebody's lap and stare at you, and if you play with her, she will give you the biggest smiles.

The girls are getting physical therapy, occupational therapy, speech therapy, feeding therapy, play therapy and music therapy. We have a ton of therapies, but it's great because you can really see the progress. They're working a lot on their gross motor skills and moving, and so they're a little bit delayed when it comes to speech. From what I've heard a lot of times, kids will either focus on one or the other, and the one will take a back seat until they kind of progress a lot, and so the speech is just taking a little bit of a back seat. Hopefully soon it'll start making its way to the forefront.

Yea?  Tell everyone, say, today is our on3 year anniversary of our separation.

The thing I'm looking forward to is for them to walk. I can't wait to see them be able to run around with the other kids and not seem like they're any different. To me as a mom, I can't wait to see them be able to enjoy that and be able to do all the things that everybody else can do.

Good job Abby.

We come up to CHOP every three to four months. To come up to CHOP, it takes us about 10 hours each way, but the level of care that we get here and the family that we have here makes it totally worth it.

The next steps for the girls are, we're working on weaning different medications and then we're working on figuring out when to do reconstructive surgery. We don't want to push them back anymore because any hospitalization, a lot of times will stop the progress for a little while. And so we kind of wanna see, let them progress as much as they can in these early years. So, time will tell.

Jesse Taylor, MD: So we think probably around age, somewhere between ages 3 and 5, we're gonna bring 'em back to the operating room and just fill in the significant holes that they have on the top of their head. It's very safe for them to live with no bone on the top of their head now, but as they get older, participating in sports, etc., it'll be good for them to have completed skulls.

Abby and Erin will also have plastic surgery on their faces and scalps.

The girls recovery is due in part to novel techniques that reconfigured their skulls and tissue before surgery.

This led to a better, safer surgery, and allowed the team to separate the girls when they were younger.

Gregory Heuer, MD: Because we did the surgery at an earlier time point, we think that's why the twins healed better, we think that’s why they were able to recover better from the brain standpoint, and ultimately we're hoping that it allows them to have a better outcome long term.

Heather: We were in the hospital for I think 485 days. It's a long time. I do think about how … how I got through that time in the hospital. It was … it's almost like a dream now. I think back and go, I can't believe we made it through that. But looking back, I would do it all over again to see how happy they are now.

Before the girls were separated, they used to smile all the time, and they would play and they were happy. And then after surgery, it took them a little while to get back to that because it was so difficult what they were going through, and they were still in a lot of pain and a lot of pain medications and going through withdrawals. Just learning so much; everything was just a struggle for them.

Now, they smile so much. And it is the best thing in the world to see. All their little teeth come out and they give you the biggest grin and giggle and it just makes everything so worth it.

Come on baby girl. Kick those toes.

Gregory Heuer, MD: As much as we're proud of the surgery that we did and the care we provided for them at CHOP, the most important thing for these children's outcome has been the care they received, to some extent, after we did the surgery. And the biggest part of that is the family.

Heather: Dr. Taylor and Dr. Heuer are amazing people. To the girls, it's their heroes. That's who they are.

Gregory Heuer, MD: We had a group of amazing anesthesiologists, amazing operating room nurses that make the surgery — all surgery at CHOP — that make it safer.

Heather:  Do you ever hear the saying that when you save a child's life, you're not really saving a life, you're saving a lifetime? That's how I always feel like with the girls. Like, they didn't just, you know, do this one surgery for them, they actually changed their lives and made it so that they can be whoever they want to be instead of just being the conjoined twins.

Topics Covered: Conjoined Twins

Related Centers and Programs: Children's Hospital of Philadelphia, Division of Neurosurgery, Division of Pediatric General, Thoracic and Fetal Surgery, Center for Fetal Diagnosis and Treatment, Division of Plastic and Reconstructive Surgery


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