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

♪♪ I think about me being their mom, I look at them and see two separate babies. Yes, they are bonded, but for me there are times when one of them is crying and the other is completely asleep, and the one who is crying I like to remind myself that you can't just pick her up. I think it's simply because we are her parents and we see them as they are and not what happens to them. As a parent, no matter what the problem is with them or what they do or what they look like, you will love that child no matter what.

Children are connected at the head; They can be connected in two different ways. One is by, whether they are connected from the front or the back; One is if they are connected and just share skin, which is very, very rare, we almost never see that. But in this case, what they share is the bone and then the cov

erin

gs of the brain, the dura mater. So in these children, it seems like they only share the skull and the cov

erin

gs, but they also share this important vein that runs down the middle called the sagittal sinus, which is where about 20 percent of the cardiac output goes through.

It is a very extensive team of people; This is the type of thing that we get together beforehand and practice so that on the day of surgery everyone has a very well defined role; everyone knows what their role is. It's like a choreographed dance movement. So there are multiple surgeries over several months. Really small babies are more regenerative the earlier they are in

life

. I think that's what's really driving us to do this sooner rather than later. This is a scary surgery and we are scared, but we can't let this guy... fear limit our ability to operate either.

We have to do the operation that needs to be done; and that's part of surgery, that's part of medicine. You would never think that your surgical team, your surgeon or your doctor are not scared. In fact, I want my doctor to be afraid for my daughter when she sees him or her. I want you to be afraid and think about everything bad 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 were referred to CHOP because we have a fetal center.

We met with the family to discuss what surgeries these

twins

might need. This is a

life

-threatening operation. I told them that twins can die from this or we could lose one twin and not the other. We really feel strongly that even though there are risks, even though they can both die from this, it's worth taking the risks to try to do it safely so we can give them the best life possible. When the girls were born, they weighed 2 pounds and 1 ounce each. So they were able to fit into my shirt and do skin to skin with them.

So they have grown a lot. Now we need two people to get them into and out of bed and two people to hold them at the same time, and they require a little more arm strength. I have never had the opportunity to hold my baby in front of me and look at him and study him. I have to look at them both and they are usually quite far away from me. So having that contact with them and being able to do it whenever you want, without cables, will be great. ♪♪ Girls are starting to want to see the world.

They want you to know, look what they're hearing. They want to see people walking from one place to another. So once they're separated, being able to sit and see everything, being able to look in any direction they want, no matter what their sister is doing, I think it's going to be amazing. You are here for a reason, it is totally true, you are part of a world that counts on you. But life works together, the good and the bad, the silly and the horrible, the happy and the sad. Remember that the next time a day goes wrong for someone else, you will always be strong. ♪♪ Do good.

You are big, you are brave, you are strong, right? ♪♪ Separating

conjoined

twins is clearly a team sport. You need all the specialists to play a role, kind of like putting together an orchestra, right? You want everything to work together, which requires tremendous experience and tremendous technical knowledge. And in my opinion, a crucial ingredient is the passion for excellence that permeates all areas of Children's Hospital of Philadelphia. ♪♪ At some points, you are very optimistic, very excited. And other times, it's stressful, we don't know what path it will take, we don't know what decisions will have to be made.

So when they started, they went in from one side and separated a lot of the little blood vessels that they share. They ended up discovering that they shared some brain tissue and separated it. Fortunately, the brains did not have any inflammation; It was very minor. They separated from one side to the sagittal sinus, and from then on they turned them over and began to go from the other side to the sagittal sinus; and the sagittal sinus is kind of the end goal...lots of anticipation. ♪♪ That was difficult. Everything was fine until we got to the breast and Abby didn't like having the breast removed, so she bled and... her brain swelled, so she came very close to losing it.

I'm worried about her brain swelling, so I think they'll both be sick for at least a few days. She could even keep them asleep and basically in a medically induced coma. But they're separated, they're safe, the anesthesia team was just heroic. ♪♪ It's scary to see these kids that, frankly, we've become emotionally attached to, teetering on the edge of the abyss. And they turned out well, and that's pretty amazing again. I think it is a true testament; everyone stays there. It was a long operation with many ups and downs, emotional and physical, both for us and for all the members of the team and for the girls themselves. ♪♪ And that's a story, it's really not bad, but it could still be better, I figured I had.

There was nothing to look at, no people to greet, nothing that excited you or made your heart beat? Nothing I said, turning beet red, but a simple horse and buggy on Mulberry Street. ♪♪ The last two months since surgery have been a roller coaster, to say the least. They are very happy girls and content with what they have been through. They have never lived outside the hospital walls and are still happy; They are not afraid of people. It's just amazing to see that they are so brave through all of this. Say I love you daddy. The girls' trip is far from over.

And many times I feel like we are about to go home, that we are almost done, but I have to keep reminding myself that we still have many obstacles to overcome. The most important thing is that they now have no skull on the top of their heads. So we'll have to go back to CHOP and do a rebuild. CHOP was one of the only places that gave us hope for our girls. When we first heard about them, we didn't really know what to expect, but coming here, it's been a family. That is truly a place where miracles happen.