Children’s Hospital of Philadelphia Successfully Separates Conjoined Twin Boys

Shaneka: When it comes to being pregnant, a lot of women don't talk about how complicated it is, how life threatening pregnancy is. And I feel as though that's not talked about a lot as far as us women talking about how hard it is to carry a baby or even for some women to even get pregnant. Because sometimes you don't know if you're going to have your baby at the end.

Or if you're going to make it to end.

I found out I was carrying twins the twelfth week.

That same appointment, the doctor seen a second heartbeat, but she didn't see a membrane. She said, I'm going to set you up appointments to come back next week. And they're going to do a whole ultrasound and see if they're conjoined or not. When she said conjoined, it's like, okay, the whole time we're going, we having twins, but they might be conjoined.

But at the same time, we're still so excited. But we're still worried because we don't know what the ultrasound is going to say. 

Tim: I would definitely worry, but at the same time I had wondered, I didn't want to jump to the gun, but I just wanted to wait for that next appointment. It's to see what, you know, what the outcome is.

Shaneka: You don't know where to go from there, because you never, when you never experience this. It was a lot of tears. We talked to the specialist when she called us, and the first thing that was said was terminate. And once she said that, then there's emotions everywhere, because I'm already emotional, because this is the same day.

Tim: There was nothing positive. 

Shaneka: This is all happening on the same day. 

Tim: Nothing positive. 

Shaneka: I was emotional. Because I had, I lost both of my brothers. So, I was emotional that it was twins. I didn't even know if they were going to be boys yet. But it just made me emotional. So, we found out they were boys. It was waterworks because I thought of my brothers again.

Because, you know, your grieving process is your whole life. It's just learning to live without those people being there. But once they said it was boys, I was like, oh my gosh. Like, tears and I'm excited at the same time. So, one day we just sat down, me and Tim, just sat down. And we talked and Tim was like, I don't, he said, I just have a feeling that we shouldn't terminate, we should wait and take our time.

I'm like, okay.

Nahla Khalek, MD, MPH: It is not unusual that families will come to us and during the course of our conversation during consultation, they will share that they were advised, as a primary option, that interruption of pregnancy would probably be the best way to go. When a diagnosis of a conjoined twin pregnancy is identified, because of the rarity of the diagnosis, it is imperative, imperative, to make a referral to a center that has a long standing experience with fetal diagnosis and treatment.

I think it's incredibly important to respect and empower patients and their families by offering them a level of education and assessment where even if we can't change the scenario, they at least feel empowered enough that they can make informed decisions about their pregnancy. 

Holly Hedrick, MD: The boys went through a series of examinations where really everything is looked at from head to toe.

Also fetal echo echocardiograms for both, ultrasounds for both, and then MRI for both. And then we review everything together with maternal fetal medicine and we make that evaluation. And so we were very enthusiastic that first day. I think we had a lot of good news. Number one was the chest were not joined. Their hearts were not joined.

They had separate normal structure function hearts. It looked like they were joined at the liver. Their diaphragms are also shared, which is common, and then their abdominal walls are shared. So we told them that first day that things look favorable for separation.

Shaneka: So after we were done the ultrasound and we sat down with Dr. Hedricks and the rest of the team, and they was like, oh, this is easy. And you know, we still like, really? Like, okay. 

Tim: Yes, and that's another thing too, like. 

Shaneka: They were excited. 

Tim: They were excited and the energy changed, and that changed all of us, for how confident they was and how positive they was. It started getting my spirits back up. So I really believed everything they said. It felt good to hear that.

Nahla Khalek, MD, MPH: When family has decided to move forward with the pregnancy, there is a very well laid out strategy for managing the pregnancy. We also embed throughout the pregnancy, in addition to routine prenatal care, very detailed psychosocial support. This is a transformative experience. It's an incredibly stressful experience.

There is a holistic approach to care that doesn't just cover the medical aspect of care as traditionally appreciated, but also makes sure that the whole patient is supported both emotionally, spiritually, as well as socially.

Shaneka: The rest of the pregnancy, for me, I was still detached. No matter the news was good that they could be separated, but it was still a bit of me being detached, like not connecting. You know, when you're pregnant and you sing to your baby or you talk to them like while they are inside you, I didn't really do any of that.

Because I was so focused on, I wanted them to be okay.

So, we got home, I opened the door, and my water broke. And I'm standing there like, that didn't just happen. So, as it kept going, I'm like, Tim, will you hurry up? My water just broke.

So, we get to the hospital, and from that point on, it was like so calm. 

Nahla Khalek, MD, MPH: It was an unscheduled cesarean delivery that took place in September.

Our colleagues in pediatric surgery and neonatology had already done a number of simulations, and were prepared to receive the twins. Even though it was unscheduled, it was not unanticipated, and it was really a pretty awesome day for everyone all around.

Shaneka: They were tiny. 

Tim: They was tiny.

Um. It was like pretty much like my hands are pretty big, so pretty much like this. 

Shaneka: Like you can hold them in your palms. I was like, oh my god, they look just like my brothers. We have this thing in my family, the bushy eyebrows, and that's exactly how, that's exactly when they came out, the eyebrows were super bushy.

I also think what is not talked about is what I did go through after I came home from delivering, was, it was really bad, like. You think, like, okay, you're leaving your babies, you're not taking them home. My first two nights, I cried. I woke up crying because I didn't have, they wasn't there.

Nahla Khalek, MD, MPH: So postpartum depression is a perinatal mental health condition that falls under perinatal depression.

And this actually occurs more commonly than is appreciated. It is very underappreciated. It occurs in about one in five women and in about one in 10 men. It is exacerbated by high stress environments that could include obviously, the delivery or birth of a conjoined twin pregnancy. It is one of the reasons why having a psychosocial team embedded into the care of our families is integral to our approach.

Shaneka: Mental health is real. You never know what somebody is going through. What you see on the outside is different from what they might be going through. My oldest brother, his name was Irvin. He passed away to gun violence. My younger brother, his name was Steven. He lost his battle with mental health. And he's the reason why I speak so heavy about mental health.

We talk about our feelings and about the twins like, what's happening? How are you feeling about this? But sometimes you can't even explain it. 

Tim: Yeah, I always can tell. But I just try, like I always do, just try to keep it positive and stuff like that. I do my best on keeping it positive. So I try to do little things to help her because I know when she be deep in her thoughts, I gotta try to get her together.

Shaneka: So, going through that, that's not talked about either, like the disconnect, and then still being disconnected after even having them. Like you put on a front and a smile, and it's like, oh these are my babies, but you know, like inside you're like screaming like, what is going on, what is going on, like trying to figure out how to get through it. 

At first, I wasn't holding them. I wasn't doing skin to skin with them. I felt like I didn't want to hurt them. I didn't want to, like, grab them in any type of way that could have hurt them. But the nurses were helpful. And so once I started, like, having, like, really skin to skin moments and really just, like, okay, they're here now and started by talking to them a little bit and, you know, getting into the rhythm of things.

I really got into this is my life now moment. Like, all right, Shaneka this is your life. You have these boys, they need you.

CHOP has a whole team, right? We learn a lot about, it's not just nurses and doctors here, they have a therapist, you have a psych therapist, music therapist. 

Music therapist: Hello, come on, hello,

hello friend, let's sing and play again. 

Shaneka: You get the help that you need, if you need it.

Holly Hedrick, MD: So the, the boys were born two months early, which is always scary. But they really responded very well to everything that they needed to do. And it is a village of people that come together to make this work. And so the simplest of things is actually complicated. The being delivered, supporting the airway.

The feeding is sometimes complicated. And the learning to do things that babies are supposed to do. To sit up, to have tummy time, to play, to interact with their environment. It's all got a level of complication that is unique for each set, and that the therapists here have really engaged with, and really make their stay here special.

Tim: The staff has been awesome. I tell myself, the staff been awesome. They, you know, they genuinely love my kids, but it's still hard that they still here, in the hospital, but you know, I know I didn't work out. So I just, you know, keep telling myself they're going to be home soon. They're going to be home soon.

Shaneka: The boys were up and excited like they thought, like they knew something's going on.

So we didn't expect to get like too much sleep because so many different emotions you have going on.

I was emotionally overwhelmed with, like, joy and excitement. A little bit of nervousness because it is a surgery. And I feel it still, them being so young, it's still, like, scary, you know. These are my babies.

Nahla Khalek, MD, MPH: I think that this has been a, kind of an emotional rollercoaster for the family. When I talked to mom, I kind of told her that being able to be a surgeon in that case is the most intimate relationship I can imagine.

It requires a lot of trust, and so building that up and I think feeling very responsible to the family and to the boys. It's a huge, it's a huge privilege.

Holly Hedrick, MD: All right, these are the McGlaun or Ruffin twins. On the right, we have Amari, who is baby A. On the left, we have Javar, who is baby B. These guys are from Philadelphia. They are joined at their liver, diaphragm, abdominal wall. There's a small enthalocele. The bottom of the sternum is also a U. So those are the things we're going to divide.

Everybody's good? 

Good. All right, well, let's do it.

So the boys shared in their liver. It's the largest organ in our bodies. The really nice thing, though, is that they had equal parts and their equal parts were normal size. So the vasculature was very identifiable by the ultrasound. So it was the perfect scenario. 

Surgeon: Here's the baby B gallbladder. Yeah. Here's the baby A gallbladder.

Here's her falciform ligament.

Holly Hedrick, MD: It's easy when everyone has the same goal, which is that everyone just wanted the boys to do well. And I think that there's real love in that from the staff, as well as everyone who's involved.

So that was the greatest part, I think, about working as a team as everyone is very motivated for the end goal, which is getting these boys safely separated. 

Just cradle them in your arms like this, Matt. Like a football.

I got it. I got it.

Alright, what do you think of that? I love it. That was great. It looks amazing. Done! Alright. I think we should go talk to them. 

Nahla Khalek, MD, MPH: Yeah, yeah. We should. 

Holly Hedrick, MD: So they did great. No surprises. The ultrasound was right on target with what we thought. They're both closed up. There's enough skin. 

Nahla Khalek, MD, MPH: They have new cute little belly buttons.

Holly Hedrick, MD: So when you see them, they'll have a breathing tube in. They'll have another tube that's in the nose that's going into the stomach. 

Shaneka: Javar, Javar.

Kaylum: I'm just real grateful that, that they're here and that I get to play with them and that I just get to smile with them.

Nahla Khalek, MD, MPH: Shaneka and her family are an extraordinary group of people. One of the many reasons that I love my job is because I get to bear witness to the incredible grace and strength that our families bring. They are here because they want to learn as much as they can about their baby, and they want to do as much as they can for their baby.

They just want to be able to say, we did everything we could that is within the realm of what we feel to be acceptable in our lives, and what will give us a sense of peace. 

Shaneka: I was thinking about them being like five going to kindergarten and they like, and they see a picture or something or they got to do show and tell.

And I showed them a picture and they be like, well, who's this? And I'm like, y'all were conjoined. That's y'all. They could take this to show and tell.

Tim: I was going to tell them that y'all blessings, all of y'all blessings, but y'all journey I went through was like, it's a miracle blessing, like all this on y'all, this was a blessing.