Brailey: The biggest question we just kept asking is, what do we do? We had never heard of this condition.

By what our physicians were saying in Tennessee was, this is something that you have to act on fast. And so we needed their guidance. So we started asking: Where do we go? Who do we see? 

Louis: And, and even then they were just like, there's nothing they can do. And it was more that we're just going to have to wait for her to die.

Brailey: When we first heard of the diagnosis, even back home, we just kept praying and asking God, just help us find our answer. And within a week we were at CHOP and there was hope. And at that point, when we heard there is something that can be done, even though it was risky and there are risk involved, you know, we discussed it one last time, but we decided let's give her the best chance we possibly can.

And so we ... we said yes.

Juliana Sanchez Gebb, MD: I think in Arley's case, she would not have survived if we had waited. You know, I didn't even think we could wait the two days to get until Monday before we intervened. I think she would have been too sick to survive at that early gestational age.

So I saw them on a Friday and they said, you know, can we wait until Monday? We're feeling a little nervous about all of this happening so quickly. And I said, I don't think we can. I think that we have to do the surgery tomorrow. 

Holly L. Hedrick, MD: A pericardial teratoma is a mass or tumor that develops inside of the sac that surrounds the heart.

The heart needs to be able to fill and contract, fill and contract. And if there's a mass that's pushing on it, then it has difficulty quickly. Especially if that mass grows. 

Jack Rychick, MD: They can grow very, very large. And if they grow in the wrong places, it can impede the normal cells and normal organs and the function of those organs that are there.

Holly L. Hedrick, MD: It's a mass. It's pushing on the heart. And if we remove the mass, the heart can work and the baby can recover. But if you wait till the baby is too sick, then there's really no hope.

Jack Rychick, MD: With fetal surgery. The tricky part, of course, is, is the access and gaining access, and how the heck do you do that with a fetus, where you have both the mom and her health and trying to get to the fetus itself, let alone the size of the fetus and considerations about the fetal circulation and maintaining that in a safe manner.

That's been the challenge previously, up until the innovative techniques that have been developed by CHOP in the last few years.

Holly L. Hedrick, MD: During the operation, we expose the uterus. It's a careful mapping of exactly where the placenta is by maternal fetal medicine. So Dr. JeGebbas there with ultrasound continuously looking at the fluid, looking at where the placenta was, and choosing the ideal spot to enter the uterus. And then we expose the baby's chest.

And we do that by actually leaving most of the baby inside and just the arms come out. So one hand gets an IV for giving fluids, blood, medicines. Another hand gets a pulse oximeter. So that we can monitor the baby continuously. At the time we did the fetal surgery, Arley was 832 grams, which is roughly 1.8 pounds. She would fit in your hand. 

Jack Rychick, MD: It's science fiction. During my medical school days, this was unimaginable. That we'd be able to perform fetal surgery and to be able to get a successful outcome. I think it's still science fiction, you know, to a degree. 

Juliana Sanchez Gebb, MD: The teamwork is critical because if you don't have the baby being resuscitated in the right way, if you don't have the mom being cared for in the right way so that her blood pressure and her heart rate are good, then the outcome would be poor.

So in order to have a good outcome, you really need all of the subspecialists to get together and make a plan together.

Holly L. Hedrick, MD: Dr. Maeda from cardiac surgery came in and he removed the tumor and repaired the place where it was attached to the aorta.

After the tumor is out, we close the chest, close the skin, put the baby back inside, take all the monitors off. Close the uterus in two layers, put it back inside, close the layers of the abdominal wall, and from then on her pregnancy life is very altered and changed in terms of what she's allowed to do and how she needs to be close by and her whole family's life has changed.

Jack Rychick, MD: CHOP is at the forefront of managing tumors like this. And it does take an element of confidence and a spirit of innovation. Confidence in your team members that they're at the top of their game, and the faith of a family that they put in us that we can deliver on what we're offering.

Brailey: The first moment I saw her, I remember joy, relief. I remember looking to see what her chest might look like. Would there be a significant scar? Would she look different? And she looked perfect to us. 

Louis: It was, it was amazing. It was, it's like the light at the end of the tunnel, the finish line. It's really thrilling that we've gotten this far.

That, you know, technology has gotten this far, you know. We're very thankful that medicine has advanced enough that they can do open heart surgery on a fetus.

Brailey: So right now Arley is almost, almost two months old. And she's doing great. She is having regular checkups with her pediatrician. And as far as her growing and developing, they don't expect there to be any issues. Her heart is functioning normally. So, they say just let her grow up and do all the normal kid stuff.

So, she's perfect.

Jack Rychick, MD: I've seen probably two dozen cases of pericardial teratoma or suspicion of pericardial teratoma in my career, probably in the past 15 or 16 years. Only four of those cases have fulfilled the candidacy criteria of falling just in the right time for an intervention for fetal surgery and also have fulfilled the criteria importantly, of having the bravery of a family

to be willing to participate in this incredibly innovative undertaking. We've done four cases and there has been 100 percent survival in each one of the cases. There are no individuals who've walked the face of the earth before that have had this condition and have survived. Each one of these kids and each one of these families are pioneers.