Monthly Archives: December 2014

Finding Strength

Heather Vincent is an occupational therapist at St. Louis Children’s Hospital, where she works with children in the neurorehabilitation unit. She joined the team more than 5 years ago, after having worked in an outpatient clinic. She says the patients she has treated have inspired her in countless ways – patients like Cougar Clifford, recently featured in “The Frontline for Hope.”

Heather and Cougar

I have so many memories of Cougar while he was at Children’s, but one of the most vivid happened on the day he left. A couple of us were getting ready to go out to lunch just after one of Cougar’s sessions, and he asked if he could go with us. We all kind of looked at each other and said, “Well, we’d have to get permission.” To that, he said, “Ask forgiveness, don’t ask permission!”

That was such a Cougar comment. But, of course we didn’t go that direction. We asked permission. His team wrote the order saying he could go with us, and we went just down the street. There we all were, sitting outside at lunch, and here’s this 15 year old who can’t feed himself. He orders soup, but he’s totally not embarrassed by us feeding him. And at one point, he just stops, looks at all of us, and says, “I’m so sorry I had to go through all of this. But all of you have been placed in my life for a reason. And I feel so blessed that I met each and every one of you.”

Cougar wound up a neurorehabilitation program patient the same way so many of our kids do. He was the victim of a freak accident. Cougar was so active before. He did a lot of activities we could never endorse. He did Motocross racing and was on a motorcycle. But he did those things as safely as possible. He wore a helmet and safety gear. He knew how to fall. But then one night he was hanging out with a bunch of his buddies, playing in the snow. He did a flip into a snowbank that he thought was snow through and through, and it was ice underneath.

A few days later, I met him in the Pediatric ICU. At that point, not only was he paralyzed from the neck down, but he couldn’t speak. We were trying to come up with a system so he could communicate, so we had a chart and would have him look at a letter, then look at another letter, and he would spell out what he was trying to say. Someone asked him, “What do you think of our communication device?” And he spelled out, “Rudimentary.”

A lot of our teens come to us in similar situations, and they are understandably angry. They resist  and they fight, and then they eventually come around. But with Cougar, I saw that spark in him from day one. Even in the PICU, he knew everything he needed to do. It was painful and uncomfortable, but he got it. He knew what we were doing and why, and he never resisted. He was always ready. So he got the most out of every therapy from the beginning. He knew he was here for a fixed amount of time, and he wanted to get the most out of therapy that he could.

When he first came in and we first started working with him, he was dependent for everything. He couldn’t roll, he couldn’t sit up, he couldn’t feed himself or brush his teeth. He had nothing. The physical therapist and I spent two hours a day with him, every day. Working to regain enough strength to do even the most basic tasks is inexplicably challenging. But he was always positive. He always worked with us. And when our time was up, he always asked if we had more time and if he could do more work. He always pushed himself.

I think about those sessions and about his comment at lunch that last day, and I just sit back in amazement. He’s a teenager. He was 15 when he was with us, and turned 16 just after he left the hospital. How, at that age, do you find that strength within yourself – not only to take care of yourself, but to reassure those around you that everything will be okay? Cougar befriended so many kids while he was here. He was a big brother and an inspiration to those he met, and I know he will continue to inspire the patients who follow him. He’s certainly inspired his therapists.

Slideshow (16)He came back to visit last week, and he can almost transfer himself independently. He still needs a little help, but he can feed himself. He can use his phone. He can wheel himself in his wheelchair. He can’t go very far, but he can move around. We’ve seen incredible progress. When he left the hospital, he couldn’t use his phone. He couldn’t text, he couldn’t control it. He didn’t have the finger movement. But today, he was holding his phone, showing me stuff on Facebook, and he could navigate through his entire phone to do whatever he needed to do.

I remember him once saying, “I know that even if I don’t get back use of legs and my hands, I’ll be able to do something amazing.” And he will. He’s bright and driven and capable. Whatever he chooses to do, he will be amazing, because he is an amazing, amazing kid. It’s like Cougar said – I’m sorry he had to go through all of this. But he was placed in each of our lives for a reason, and we all feel so blessed to have met him.

Families show Fetal Care Center nurse the power of a positive attitude

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

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