Watch the inspiring story of Addy and Lily Altobelli, conjoined twins who were separated at Children’s Hospital of Philadelphia on Oct. 13, 2021. You can help make more stories like this possible.
The Separation of Conjoined Twins Lily and Addy Altobelli
Holly Hedrick, MD: At Children's Hospital, we have a legacy of twin separation. Every single set is unique and that's one of the great challenges. There are no two sets that are the same and so they all have a unique set of challenges. They have a unique set of anatomic considerations. They're from different parts of the country. They're from different parts of the world. They have families that are invested and a huge part of the care, and so that is different in every instance as well. There's a great deal of humility that we approach each of these situations because there can be the unexpected. We've plan, we plan, we plan, we plan, and then we plan for all the contingencies but, there's still that unknown thing. And so in many ways, I feel like every time is a miracle.
Dom Altobelli: It was August 10th of 2020.
Maggie Altobelli: They just wanted us to come in, get routine heartbeat checks and the heartbeat checks would just show a healthy heartbeat. So we thought we were having one kid the whole time and I sat down and the ultrasound tech kind of looked at the ultrasound and put the wand on my belly.
And I thought, "What is that? Like, is there, is there two of them?" And she immediately took off the wand and she said, "I'll be right back. I got to go get the doctor."
When they came back in and told me like their bellies were connected. I thought like, this is, that's okay. We'll just separate them.
Dom Altobelli: Our reaction was naive because I had never even thought that this could be a possibility nor looked into it much prior to this, and and so I'm an eternal optimist. So when I heard that news, I said, "Oh, okay, can we handle it, you know, while they're in utero or do we take care of it afterwards?"
Maggie Altobelli: Slowly, we started to determine, you know, what were our next steps, how serious is this. And the doctor said, "Do your research, make sure you, you know, see what, what all's in store for you, because this is a very long, long journey."
And they weren't lying.
CHOP is known for this type of surgery throughout the whole world. I mean, they have done the most successful separation surgeries and after coming here and leaving our consultation meeting, it was a reality of looking at each other and going, "This is it. We gotta move. And we gotta, we gotta dedicate our life to bringing these girls into the world and giving them a good life and giving them a good chance."
And that's what CHOP did. They give us this chance.
Holly Hedrick, MD: When a conjoined twin family is coming, we usually know about it ahead of time, and so you're always nervous about those images and what it will bring and whether or not it means we're going to be able to go forward with plans for separation. And so that's really the first test are those prenatal images and what's connected, and does it look separable?
So we got really good news that first day. The twins had separate hearts, completely separate, and that they were normal in their anatomy in terms of their hearts. And then we knew that the liver was joined. We knew that their chest wall and body walls were joined. We knew that the diaphragms were joined. The first big challenge is the delivery and it's not to be underestimated what a challenge it can be.
Maggie Altobelli: It really is a high-risk delivery. And most conjoined sets are either they don't make it through to birth, or they're stillborn.
Holly Hedrick, MD: Every little thing that we do with conjoined twins, it's not just double, it's just technically a little bit more difficult because you have to think about their positioning and what's safe.
There are a lot of safety issues. And so we designate core teams really right from the very, very beginning.
Dom Altobelli: The delivery day was, it was wonderful. It was a unique experience. You get in the car and you drive to CHOP knowing that your life is about to change forever. That was a special moment and I hadn't known what they might look like, and you try to find some sense of what that moment might be, but you really don't know until you get to it and you see them laying there and it is, so quickly forgetting they were conjoined.
I just looked at them as, you know, these are our girls and you know, this is two lives right here that the team is taken care of, and know, now we have the opportunity to take care of, so, and it was a special moment. Are you two wrestling with each other?
Maggie Altobelli: And they're just so tiny and they were so beautiful and rosy and, I just loved their little noise. I could hear a little noises from them.
Holly Hedrick, MD: After the babies are born, it's really about stabilizing. So we made sure the babies were stable in the NICU and they were feeding and they were growing and they were in a good spot before we ever planned to do the next step. And so first was the MRIs. And from there we confirmed what was joined and what was separate.
Maggie Altobelli: Once they were transferred to the NICU, it all kind of started from there, you know, we did a lot of research with delivery to separation. And the thing that we forgot about, which is the huge part, is the care.
Nurse: Oh boy! Would you like to go for a little wagon ride?
Dom Altobelli: The next few months, there were some of the ups and downs, and those were really stressful times and there are so many specialists that help the girls. A fast, strong, powerful nursing team. And you come to a place like CHOP for that brainpower. The girls have thrived in that environment cognitively, because they see so many people and everybody comes in with so much joy and we joke that our girls are so smiley and laughy and playful because all they see is happiness from people.
We woke up at 5:00 AM together as a family, and it was a quiet morning in the room and the nursing team kind of let us be for awhile. We did their bath. We sat with mom, we read, we played with toys and the girls were so smiley and happy.
And when were just like crying with excitement and nervousness and love. Just like, "Wow, you girls have no idea what is about to happen."
Maggie Altobelli: Yeah.
Holly Hedrick, MD: It's all about the liver. The liver and the bowel. The Altobelli twins. Addy on the right. We have Lily on the left. Once we have separation, we'll move to another table and then will be the reconstruction process.
The part about pediatric surgery that's always been so attractive is that you fix things, that you get, you're making me feel. That you get people on to where they need to go. You see a problem and you can do something to take care of that problem. And so that's, to me, the most attractive part of it all and the, sort of being part of somebody's life.
So it's like, it's like, it's an incredible thing when a lot of people come together and go the extra mile.
Maggie Altobelli: We got a call at
Dom Altobelli: 2:42
Maggie Altobelli: 2:42, that Addy and Lily have become two separate girls.
Holly Hedrick, MD: It's a great privilege, it's a great joy to be part of something that's intimate and important, then sort of is with you forever.
Maggie Altobelli: It was just like a breath of fresh air to just come back home and be here.
Dom Altobelli: Yeah.
Maggie Altobelli: Yeah.
Dom Altobelli: And then also being able to sit and play as a family and just really hang out has been amazing.
Maggie Altobelli: The day that I picture, is the best day, is when we're at home and we wake up Christmas morning and we get to bring those girls downstairs and they get to open Christmas presents, because those girls deserve it. They deserve to just be normal and sit at home and be loved. And just enjoy life.
There's so much good in the world. And that's something with this experience that I know Maggie and I are really thankful for, is we got to see the best in the world and the good in the world, because anybody who reached out to us, came to us with genuine love, concern for the girls and for us.
And that, I think is the most amazing part of this whole experience is no matter what's happening in the world, there's a whole lot of good, every single hour of every single day.
The girls have guided us through this last year of life and they've showed us what having hope and faith really is, and just that strength and perseverance and going through that type of surgery and just coming out so strong. It's inspiring.
Dom Altobelli: Our wish is for them to be able to pursue a life filled with love and happiness and whatever they do, have a lot of passion for it and just go live, live a great life. They've already given us, you know, more love than we probably could have ever imagined. So we hope that they could spread that love throughout the world.
Topics Covered: Conjoined Twins
Related Centers and Programs: Richard D. Wood Jr. Center for Fetal Diagnosis and Treatment, Division of Pediatric General, Thoracic and Fetal Surgery, Division of Plastic, Reconstructive and Oral Surgery, Newborn/Infant Intensive Care Unit (N/IICU), Pediatric Intensive Care Unit (PICU)