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Sloane Rilliet

After Specialized Prenatal and Newborn Care, a Healthy Girl

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Halfway through her pregnancy, Elizabeth Gedney learned her baby had congenital diaphragmatic hernia, or CDH, a potentially life-threatening defect in which the diaphragm doesn't form properly in utero. Gedney's case was relatively mild, but she required close monitoring throughout her pregnancy. Her daughter, Sloane, received intensive care after birth, followed by several surgeries to repair her diaphragm. Gedney speaks about the diagnosis and Sloane's treatment at UCSF Benioff Children's Hospital.

Sloane Rilliet

How did you find out Sloane had congenital diaphragmatic hernia (CDH)?

We found out when I was 20 weeks pregnant. My mother was with me at an ultrasound. The ultrasound tech was very quiet for a long time, then she wanted to go get the doctor. My mom was a little more clued in than I was because this was my first pregnancy, and she asked what was going on. The woman said, "Just a moment, we'll be right back." When the doctor came in, they looked at the ultrasound and were talking very quietly. Then she said, "Wow, we don't see these very often. It's a congenital diaphragmatic hernia. You'll have to go to UCSF."

My mom and I walked out, and I think by then I was just a puddle on the floor, not understanding what was happening. So I go home and look on the Internet and it just made matters worse. I was expecting doomsday.

The next day I called UCSF Benioff Children's Hospital, and the nurse I spoke to was great, really calming. She said, "Don't worry. You're in the best hands you can be. Come in" — I think it was literally two days later — "and we'll take care of you and figure out what's going to happen."

So I just held on to that — somebody's going to help me. Because when I received the news, I was just — there's tons of emotions. It was not great.

What happened when you arrived at UCSF?

I met with the whole team. Again, it was a bit scary. When we got there it was a round table with a bunch of doctors. I had no idea what was happening — I'd never even heard of a diaphragmatic hernia before. They spelled out from A to Z what to expect and the road that we were going to go down. It was a full day and it was exhausting, but by the end of the day I knew that if there were indeed any major problems, we were in great hands.

They did a bunch of tests, ending up with an amniocentesis, to make sure there were no other congenital disorders. Then we waited a week. They came back with all positive news and her diaphragmatic hernia was on the scale of mild. So from my 20-week mark of being pregnant up until she was born, I was at UCSF about once a week, testing and doing ultrasounds and seeing doctors and specialists and so forth.

How was Sloane's CDH treated after birth?

She ended up having two surgeries. The first surgery was day two or three after she was born, and Dr. Hanmin Lee was her surgeon. I felt we had a strong bond with the doctors since we'd known them for five or six months.

What happens with CDH is, when the diaphragm forms in utero there's a hole in it. Organs and squishy stuff, like the intestines, can go up through the hole, so it crowds the space. If it's severe enough, it can flip the liver in the wrong direction. In her case it was all squishy stuff, no hard organs, and the liver stayed where it was supposed to. [In surgery] they pushed it back down and sewed it [the diaphragm] up. With her, they didn't have to use any non-body material. They could use the diaphragm itself to close it, as opposed to using a patch.

Tell us about your doctors at UCSF.

I spoke to this one resident and asked, "How are you enjoying being a resident here at UCSF?" And the guy said, "Hanmin Lee is this world-famous surgeon, but you wouldn't even know it. He comes in T-shirts and shorts and his Birks and is very down to earth and just the nicest guy ever."

I remember asking Dr. Lee if we ever ended up leaving the Bay Area, what would we do? Because the first five years are very touch and go with a congenital diaphragmatic hernia. He said, "No problem. I have names and numbers of all the surgeons you'll need for any country you go to." Again, that felt really comforting and like we were in the right place.

Tell us about Sloane's second surgery.

Dr. Miniati did her second surgery when the hernia reopened. They told us that's very common with kids when they're really young, because they're growing so quickly. I came home from work one night and she was complaining, and the first thing I did was take her to the ER. Dr. Miniati came running down. They knew of her, they knew her name and they were there within the hour.

I was a little skeptical, because it was the second surgery. Dr. Miniati told me, "She's going to be fine. Don't worry about it. We'll take care of this."

How did you decide for sure on UCSF?

As far as I know from what I read, and from all the service that we received, I think it's probably one of the best places for CDH. Before she was born, they gave me a tour of the Intensive Care Nursery, just to make sure I knew exactly what to expect. There was a child in there with a diaphragmatic hernia from Napa, who they had to bring down via ambulance. Most places just don't know how to deal with it. When I was first referred to UCSF, [the referring doctor] said, you will be in the right place for prenatal care and delivery.

Interviewed April 2012

Tags: Congenital Diaphragmatic HerniaFetal Surgery
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