Conjoined Twins Abby and Erin Delaney: A Year in the Life

Heather: I think of me being their mom, I look at them and I see two separate babies. Yes, they're conjoined, but to me there's times where when one of them will be crying and the other one's completely fast asleep, and the one that's crying I like have to remind myself, you can't just pick her up. I think it's just because we're their parents, and we just see them for who they are and not what's wrong with them.

Riley: As a parent, it doesn't matter what the issue with them or what they do or what they look like, you are going to love that child no matter what.

Gregory Heuer, MD, PhD: Kids are connected by the head; they can be connected in a couple of different ways. One is by, if they're connected at the front or the back; one is if they're connected and they just share skin, which is really, really rare, we almost never see that. But in this case, what they share is bone and then the coverings of the brain, the dura. So in these kids, it looks like they just share the skull and the coverings, but they also share this important vein that goes down the middle called the sagittal sinus, which is where about 20 percent of your cardiac output goes through.

Jesse Taylor, MD: It's a very extensive team of people; this is the kind of thing that we get together beforehand and we practice so that the day of surgery, everybody has a very well-defined role; everybody knows what their role is. So it's like a choreographed dance movement.

So it's multiple surgeries over several months. Really young babies are at their most regenerative the early on they are in life. So that's what really, I think, is driving us to do this sooner than later.

Gregory Heuer, MD, PhD:  This is scary surgery and we're scared, but we can't let this sort … the fear limit our ability to operate either. We have to, you know, do the operation that needs to be done; and that's part of surgery, that's part of medicine. I wouldn't ever think that your surgery team or your surgeon or your doctor isn't frightened. In fact, I want my doctor to be frightened for my daughter when he sees her or she sees her. I want her to be scared and thinking about every bad thing that can happen to try to stop it. But be knowledgeable enough to stop it too.

The first time we met the Delaney family was before the twins were even born. They got referred to CHOP because we have a fetal center. We've met with the family to discuss what surgeries these twins might need. This is life-threatening operation.

I told them that the twins can die from this or we could lose one twin and not the other. We really felt strongly that, although there's risks, although they can both pass away from this that it's worth the risks to try to do it safely so that we can give them the best life that we can.

Heather: When the girls were born, they were 2 pounds, 1 ounce a piece. So they were able to fit in my shirt and do skin to skin with them. So they've grown a lot. Now we need two people to take them in and out of bed and two people to hold them at a time, and they require a little bit more arm strength.

I've never had that chance to, you know, hold my baby in front of me and look at them and study them. I have to look at both of them and they're usually pretty far away from me. And so, just to have that contact with them and be able to do it whenever I want to, with no wires attached will be great.

The girls are starting to want to see the world. They want to you know, look at what they're hearing. They wanna see people walking back-and-forth. So once they're separated, for them to sit up and see everything, being able to look whichever way they wanna look, regardless of what their sister is doing, I think will be amazing.

Riley: You're here for a reason, it's totally true, you're part of a world that is counting on you. But life works together, the good and the bad, the silly and awful and happy and sad. Remember that next time a day goes all wrong, to somebody else, you will always be strong.

Heather:  Do good. You're big, you're brave, you're strong, right?

N. Scott Adzick, MD: Conjoined twin separation is clearly a team sport.  You need all the specialists that play a role, sort of like setting up an orchestra, right? You want everything to play together, which requires tremendous experience, tremendous technical expertise. And a crucial ingredient in my mind, is passion for excellence that permeates all areas of the Children's Hospital of Philadelphia.

Heather: At some points, you're really optimistic, really excited. And then other times, it's nerve wracking, we don't know which way it's going to turn, don't know what decisions are going to have to be made.

So when they started, they went in through one side and they separated a lot of the little blood vessels that they share. They ended up finding that they did share a little bit of brain tissue, and they did separate it. Thankfully, the brains didn't have any swelling; it was very minor.

They separated from one side up to the sagittal sinus, and they since then have now flipped them and just started to go from the other side to the sagittal sinus; and the sagittal sinus is kind of the end goal — a lot of anticipation.

Gregory Heuer, MD, PhD: That was hard. Everything went well until we got to the sinus and Abby did not like that sinus being taken, so she bled and she … her brain swelled, so it was really close to losing her. I'm worried about her brain swelling, so I think they're both going to be sick for a few days at least. I might even keep them asleep and basically in a medically induced coma. But they're separated, they're safe, the anesthesia team was just heroic.

Jesse Taylor, MD: It's scary to see, these kids that frankly we've become very emotionally attached to, teetering on the brink. And they came out OK, and then that's pretty incredible again. I think it's a real testament; everybody sticking in there. It was a lengthy operation and lots of ups and down, emotionally and physically both for us and for all the team members and for the girls themselves.

Two days after surgery

Riley: And that makes a story, it's really not bad, but it still could be better, supposed I had. Was there nothing to look at, no people to greet, did not nothing excite you or make your heart beat? Nothing I said, growing red as a beet, but a plain horse and wagon on Mulberry Street.

Heather: The past two months from surgery have been a rollercoaster, to say the least. They're such happy, content little girls for what they've gone through. They've never lived outside hospital walls and they're still happy; they're not afraid of people. It's just amazing to see that they're so brave through all of this.

Say I love you daddy.

The girls’ journey is far from over. And it feels a lot of times like we're about to go home, we're almost done, but I have to keep reminding myself we still have a lot of obstacles to overcome.

The biggest thing is right now they don't have any skull on the top of their heads. So, we will have to come back to CHOP and get some reconstruction done.

CHOP was one of the only places that gave us hope for our girls. When we first found out about them, we really didn't know what to expect, but in coming here, it's been a family. That really is a place where miracles happen.