Addison's Story: Mediastinal Teratoma

Mary Kelly was 26 weeks pregnant with her daughter Addison when she and her husband Jed learned that their baby was very sick. Addison had a large mediastinal teratoma, a tumor in the middle of her chest between her heart and lungs that was causing her to go into heart failure.

They turned to The Children’s Hospital of Philadelphia to find out what their options were, and opted for fetal surgery. A large, multidisciplinary team successfully removed Addison’s tumor while she was still in the womb. Read more about Addison’s journey.

Mary walked into The Children’s Hospital of Philadelphia when she was 26 weeks pregnant with Addison. Look at her now.

Transcript

Addison’s Mediastinal Teratoma Story: Look at Her Now

Mary:  When we found out we were pregnant with Addison, it was a little over a year after we had our son. So obviously we were elated with that news. When I was 20 weeks pregnant, we had a completely normal ultrasound done. And then about five to six weeks later we found out that something was terribly wrong with Addison.

There was a large mass in her chest and she was very ill. He said to me, if anything can be done for your child, it can be done at CHOP and you need to get there now, you need to call today. He told me that they do fetal surgery there.

When we got to CHOP it was a very comforting feeling. As scary as what was happening was, we really felt like we were in the right place.

Her diagnosis was a mediastinal teratoma, which means she had a large tumor in the center of her chest. And it was pushing on her heart and lungs, so it actually put her in heart failure.

Jed: There were only a couple options we had.

Mary: We decided to go forward with the fetal surgery.

Jed: Couldn’t believe that they could do that kind of thing.

Mary: They wouldn’t actually take her out of my uterus, but they would open up her chest and remove the tumor. And then they would close up the baby, and then close me up. And hope that she would have time to recover while in the womb.

Jed: We felt that even though it was a small chance, at best 50/50, it was worth it to save Addison. It was a really long day. We were scared, we were praying.

After the surgery was complete and they had told us that it was successful, obviously we were thrilled.

Mary: It really was a day by day situation after the fetal surgery. And just closely monitoring how Addison was doing.

Jed: Mary started to go into labor six days after the fetal surgery. We were very scared, we kind of, you know, it was the worst case scenario on our mind that she wasn’t going to make it.

Mary: Addison was born three months premature, and weighed two pounds. We gave her the middle name Hope because at the time we, that’s all we had, was hope.

Jed: The first time we went to the NICU to see Addison was very scary. She was obviously had just recovered from a major surgery six days before, so she had a very large scar down her chest with sutures. But I was thrilled to see her. And there was no less than four or five nurses and doctors around her the whole time.

Mary: She was hooked up to so many tubes, and IVs, and monitors. But I felt so good being next to her. She came home about two weeks before her first birthday. The first couple of years she was home we had a lot of challenges, but she is a very strong kid, and I think she was very motivated by her big brother. He was running around the house like a crazy kid. And she just wanted to do a lot of what he was doing.

Jed: Addison is a sweet, loving, tender, caring girl.

Mary: She’s a regular kid with a big scar down her chest. We just never imagined she would be doing all these things that she’s doing.

Jed: We were blessed with so many wonderful caregivers, the doctors, the nurses, social service. Everyone we encountered was wonderful. And we wanted to find a way to give back.

Mary: We started a fund there called the Addison’s Hope for Fetal Families Fund. It’s for families who can’t afford to travel to CHOP. We think that everybody should have access to the wonderful resources at CHOP.

Jed:  I will say that one of the most rewarding things that I’ve ever had in my life is knowing that it’s actually working. That there are kids that are in this world because the parents have been able to get there, and we’ve been able to help that happen.

Mary: Addison is an unbelievable kid. I really believe she lives every day just feeling happy to be alive.

Jed: She’s something special without a doubt. Absolutely a miracle, we’re very lucky.

Mary: Our family walked through the doors of CHOP when I was 26 weeks pregnant with Addison…

Jed: And look at us now.

Topics Covered: Fetal Surgery

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