Shannon Waller, RNShannon Waller is a nurse coordinator with the Fetal Care Center (FCC), a partnership among Washington University, Barnes-Jewish Hospital and St. Louis Children’s Hospital. After receiving her nursing degree from the Jewish College of Nursing, Shannon worked for several years on labor and delivery units. Two years ago, she accepted a position with the FCC, working with families who are going through exceptionally difficult pregnancies. The Wilsons were among her first families. Aliyah, featured in the first episode of this season of The Frontline for Hope, was born without a portion of her skull, a condition no child had previously survived. As Shannon explains in From the Bedside, however, knowing her family, no one is surprised Aliyah has beaten the odds.

I remember the first time I met Andrea Wilson. I’m a nurse coordinator with the Fetal Care Center, and part of my job is to make sure that all of our moms are familiar with the hospitals and spaces they’ll get to know while they and their babies are in our care. I remember Andrea saying I’d know her because she would be in pink. And she wasn’t joking! I walked in to meet her, and I saw this vibrant woman with a great smile wearing awesome hot pink pants. I knew from the start we would get along well.

aliyah parentsThe day Andrea and her husband went to learn whether they were going to have a son or a daughter was the day they learned something was wrong with their baby. It’s scary no matter what, but this was their first baby. They were excited, like anyone who is expecting a first child. They were nervous for all the normal, right reasons. But now, they were scared for all the reasons no one thinks they should have to worry. That first time I met her, we weren’t totally sure what was going on with her pregnancy. Initially, we thought the baby just had a mass on her face that would need to be removed.

Any family that has something going on with their baby struggles, but I think it’s an additional struggle when people have something craniofacial going on. No one wants their baby to look different, or for people to stare at their baby. It’s hard. But that never came up with her. I would bring it up, and offer to have plastics come in and consult. But it was a non-issue. To Andrea, this baby was beautiful. It didn’t matter to her.

Throughout her pregnancy, we met several times at her doctors’ appointments. And every time she showed up in bright colors, wearing amazing earrings, and beaming from the inside out. She was positive and excited for this baby from the beginning, and that never wavered. Whenever I’d see her name on my schedule, it would make me warm and fuzzy. I knew it was going to be a good visit.

I’m sure somewhere in the 3:00 in the morning times that haunt all of us, there were times she was terrified. But, to us, she always presented a strong, optimistic front. She seemed like a karmatic person – like what you put out is what you’re going to get. She believed things were going to work out fine.

I think attitude and support system make all the difference. Just being a normal pregnant woman, approximately 10 percent of women suffer post-partum. Then you factor in a baby that’s going to be high risk. It would be unrealistic to think everyone is going to be positive all the time. They’re going through one of the worst experiences of their life. At some point, you’re going to break. If you have people around you who can help hold you together and lift you up, then that’s going to make a huge difference. Coming into it with a core of, “I’m going to make the best of this situation,” can make a huge difference. Because you have all of these other chemical factors fighting against you. If you can bring forward as much positivity as you can, it’s going to help

I say it kind of in gest with a lot of my patients – I understand that no one wants to be my patient. I get that. I just do my best to be here for them and to be the best nurse I can be for them, even though I know they don’t want to be here.

One time I was talking with one of the physicians I work with, and he said sometimes being in this role is similar to being an oncology nurse. Even though it’s very different, emotionally, it’s similar. You’re dealing with incredibly sick people who physically and emotionally have so much going on. I think it has helped me realize there is a whole level of nursing beyond physically being at the bedside, being with a patient, and just being part of their experience and helping them . I get to act as an advocate for them and participate in those really, really hard conversations. Not all babies I see make it. How are we going to honor your baby while your baby is here? What’s important to you as a mom? Is it important to get these pictures? Are there family rituals that are important to you? Those are the conversations we try to have, so five years down the road when they look back at their experience, they can say that may not be the outcome we wanted, but we did everything we could to make the time we had special.

Aliyah at birthI was not in the delivery room the day Aliyah was born, but I remember one of the physicians who was there came and found me afterwards, and she was shocked. She said, “I handed her off, and she was literally missing her skull.” I asked her what she meant, and she said, “I looked at her, and I saw brain.”

I remember thinking, “That baby is going to die.” I never want that for any parent, but in this case, especially, we didn’t prepare for that. We were prepared for surgery and some deficits, but not that she would die. And that hit me like a ton of bricks.

Andrea’s amazing. Not that you want something bad to happen to anyone, but when someone is such a ray of sunshine…  I remember going and seeing her the next day, and asked what was going on. She was still rolling with it. She was a little rattled, but still had that spirit. She said she’s missing this part, and we’re going to figure out how to make it work. She said, “She’s going to be fine.”  I gave her a big hug.

She was right. I saw them a few times over the next several weeks, but I really remember the six-week post-partum appointment. Andrea told me, “Aliyah doesn’t even know she’s sick. She doesn’t know she has that mass. Other than having to look around it, she doesn’t know she has that.”

I think that is what keeps me going when I’m thinking I can’t do this job anymore. I get attached to these families and things happen and babies do poorly, then I take a step back and look at how amazingly strong they are, and how they find this ability to keep getting up and coming to the hospital and brushing their hair and putting on clothes that match. No matter when I saw her, Andrea was still wearing bright colors and fabulous earrings.

Before I started with the FCC, I was working on labor and delivery. I’ve been on this side for two years now, and it’s been really an amazing experience to be part of these families’ lives. It’s so different than labor and delivery. Because even though you’re with someone on L and D at one of the best moments of their lives, it’s still not the same connection that you form when you’re with someone for months through such a challenge in their life. I’ve kept in contact with a lot of the families. They’re kind enough to think of me and e-mail me pictures of how the baby is doing.

To hear that Aliyah is meeting all of her milestones and she has such a little sass about her brings me such enormous joy. It’s so mind blowing. But it also makes sense. Even when these babies are small, I can see how their parents’ attitudes are shaping who they will become. When we hit this huge road bump after she was born and things were worse than what we anticipated, I knew she was going to be okay. I knew Andrea was going to be okay because she was so optimistic with everything. There is no reason Aliyah should have survived her condition. But not only is she here, she’s thriving. It’s amazing.

aliyah today