Emily's Story: Sacrococcygeal Teratoma

Eleanor (El) and Matt were thrilled when they learned they were expecting their first child. But at their 20-week ultrasound, they received devastating news: their baby had a sacrococcygeal teratoma (SCT) — a large tumor located at the base of the tailbone.

Doctors told them that their baby had a 50/50 chance of surviving and mentioned that some expectant parents in this situation choose to terminate. El and Matt chose to call The Children’s Hospital of Philadelphia’s Center for Fetal Diagnosis and Treatment. They came away calmed, comforted and armed with options. Read more about Emily's journey.

El walked into The Children’s Hospital of Philadelphia when she was 20 weeks pregnant with Emily. Look at her now.

Transcript

Emily’s Sacrococcygeal Teratoma Story: Look at Her Now

Eleanor: We were really excited, it was our first child. She was really wanted, and we were absolutely thrilled. We went for our 20 week ultrasound, I don’t think I’ll ever forget it, but the first thing that the doctor said was, you know, “There’s something wrong with your baby, we see a growth.” He said, you know, “You’re baby has a sacrococcygeal teratoma.” I couldn’t even say the word.

Matt: It’s a tumor that grows off of basically your tailbone.

Eleanor: She pretty much told us we had a 50/50 shot that the baby would survive. So we left that room and we were just devastated. And so the first thing we did when we left was we called CHOP. Our first day at CHOP I think the one thing that stuck out to me is when we arrived, we had a whole team of people that have seen countless moms that aren’t having your typical, normal, healthy baby. We came once a week for the rest of my pregnancy.

The first game plan was to get me to term. They wanted to get me past 28 weeks, and deliver her, and then deal with the tumor. But if something were to happen before that, the plan was to do fetal surgery.

Matt: You know, they had a plan for us either way. That they were going to do everything in their power to deliver a healthy baby, and keep El healthy as well.

Eleanor: I was 34 weeks along, we went in for our ultrasound, and I said, you know, “Something’s wrong with the baby. Something’s wrong with the baby.” And she stopped everything, she said, “Okay.” And she left the room and she came back with four or five different doctors. And they hooked me up to a fetal monitor, they had an EKG going on the baby. And they left the room, and they came back full scrubs, ready to go, and they said, “We’ve got to deliver her now.”

There are things that are out of your control, but choosing the best hospital, that’s in your control. Choosing the best people to work on your baby, that’s in your control.

Emily was born on October 31st, 2012.

Matt:  The tumor was like a third of her weight. It still blows me away today to think about how large it was.

Eleanor: Our surgery team was with her when she was born, and with her the next day too when they removed everything.

Matt: Today you really wouldn’t be able to tell that she had a major surgery, you know, the day after she was born.

Eleanor: Emily is amazing, she’s a spitfire, she’s funny.

Matt: She’ll just dance around, you know spin in a circle. She’s just like going nuts having a great time.

Eleanor: Every day, I mean, I look at her and then I think how close we came to losing her, I just can’t imagine our lives without her. There’s just absolutely no way that she’d be here without CHOP.

I walked through the doors of CHOP when I was 20 weeks pregnant with Emily, and look at her now.
 

Topics Covered: Sacrococcygeal Teratoma (SCT)

Related Centers and Programs: The Center for Fetal Diagnosis and Treatment Celebrates 20 Years, Center for Fetal Diagnosis and Treatment