Tag Archives: fetal care center

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

Defining Miracles

Chris Hoover, RN, BSNChris Hoover has more than 22 years of experience as a nurse, specializing in women’s health, labor and delivery, family planning and high-risk obstetrics.  An experience during the birth of her first child inspired Chris to choose this career.  The labor and delivery nurse caring for Chris had such compassion and kindness that Chris decided she wanted to do the same for others.  She went back to school, earned her nursing degree and was lucky enough to work in the same labor and delivery unit she had delivered in years before with the very same nurse who inspired her.  Two years ago, she joined the Fetal Care Center, a collaboration among St. Louis Children’s Hospital, Barnes-Jewish Hospital and Washington University Physicians.  As a nurse coordinator, she works with families facing enormous uncertainties in their pregnancies, many of whom have had a major impact on her life and career.  Today she tells From the Bedside about one such family, the Mannings, one of the first families she met after joining the Fetal Care Center team.

Dr. Joanie Rosenbaum’s question was anything but simple.  “What would a miracle look like to you?”  For Matt and Brejida Manning, the answer came quickly.  Matt’s words were spoken quietly but with much emotion, “To hold our baby girl alive.”  From that moment on, the goal was clear.

The Mannings were one of the first families I met after starting at the Fetal Care Center.  I had worked in labor and delivery, so I got to know many families over the years.  But this was different.  Bre was 29 weeks when we first met her, and as a nurse coordinator I would spend extensive amounts of time with her and her husband, walking alongside them through one of the greatest challenges of their lives.

Their baby girl, Gracie, was diagnosed at 20 weeks with Trisomy 18.  Trisomy 18 occurs when there is an error in cell division which results in a third copy of chromosome 18.  This extra material is present in every cell in the body and is associated with the abnormal development of many of the baby’s organs.  About 50 percent of babies diagnosed with Trisomy 18 do not survive until birth.  Only approximately 10 percent of children with Trisomy 18 survive beyond the first year of life, and many of those who do survive, many have serious health problems.

The Mannings came to the Fetal Care Center after another institution had told them there was nothing they could do for Baby Gracie. Hearing Matt define their miracle that first day, was an “a-ha” moment for me.  Doing nothing was not an option!   There is always something we can do.  We can listen, educate, encourage, and support our families.  Listening is the first step in determining how we move forward with the family and identifying what they want for themselves and their baby.  When Matt defined their miracle for us, their goal became our goal.  The Fetal Care Center team was going to do everything we could to make sure they got their miracle.

Of course these cases can be controversial.  We talk about quality of life, but in this job you realize that’s so subjective.  How do you determine what is quality of life?  This is especially true when the child isn’t even born yet.  It’s my job, and the job of everyone at the Fetal Care Center, to give the family all of the information we possibly can to make sure they understand the impact of their decisions.  The next step is to support them in the decisions they make.  We always tell them that it is a process and we continuously evaluate and communicate about what we know and expect through the pregnancy and beyond.  The plan is individualized and is reflective of the parents’ wishes.  However, when we meet this baby, it’s like starting from scratch.  It’s time to reevaluate.  We try to anticipate what’s going to happen and what the outcome is going to be, but we never know until we meet the baby.

With Gracie, we certainly didn’t know what to expect.

Delivery day was very intense.  We had more discussions about the plan for Gracie and there were lots of expectations.  Emotions were mixed.  For Bre, she wanted to keep Gracie inside, because felt that she was safe as long as she carried her.  There was quite a bit of fear and anxiety and yet we wanted it to be joyous because it was Gracie’s Birthday!   Matt and Bre knew that whatever time they were to have with her was precious, so we wanted to celebrate that.  There were tears of fear and sadness, but there were also tears of joy that day.  In the midst of it all there was calm and the quiet strength in the knowledge that we were going to meet Gracie and she would tell us how to proceed.  The plan was that we would follow her lead.

When Gracie was born and she was handed her off to the Neonatal Intensive Care Team for evaluation and assessment.  Initially, she wasn’t doing very well and I wasn’t sure she would make it out of the delivery room.  The NICU team eventually took her to Bre and placed her in her arms.  As Bre was holding her, Gracie took a couple of breaths and then amazingly enough she started crying!  So we all breathed a collective sigh of relief, and said, “Okay then, apparently Miss Gracie wants to spend some time with us!” After that, I knew that whatever happened, Matt and Bre would have those beautiful memories of meeting, holding and kissing their beautiful baby.  That was priceless.

They were able to hold Gracie for about half an hour before she was transferred over to the St. Louis Children’s Hospital NICU with her dad and the neonatal team.  Baby Gracie was greeted in the hallway by her big brother, sisters, grandparents, aunts, uncles, pastor and friends as she took her first ride through the hallways to her own room.  These amazing people continued to support the family through the coming days of Gracie’s life.  Church services were held in the hospital Chapel and friends came to visit.  The outpouring of love was powerful to watch.  There were often lines of people waiting to see Gracie.

In addition to the many weeks we had spent getting to know the family leading up to Gracie’s birthday, we were able to spend more time with them after she was born.  Gracie was in our NICU for 40 days.  Every time I gave a tour to another family or if I had an extra minute I’d stop in and say, “Hi.” I knew my day would be better because I had been to see them.  Every time, I’d look at them in amazement.  They handled everything with such grace.  Before I met them, I wondered how I would handle something like that.  Putting myself in their shoes, I thought that I wouldn’t be able to breathe or function.  Now, when I think of facing something similar, I look at the Mannings as an incredible example.  You focus on what’s good and the blessings in your life and you make every minute count.  My new perspective is that you have to face the grief and demonstrate the kind of strength and commitment that Matt and Bre demonstrated.  They were clear in their goals and made sure that Gracie’s life mattered to everyone they came in contact with.  Gracie was a person, not a diagnosis. They showed so much courage, love and character that it gives me hope that I can honor that by doing the same.  The Mannings were the first, but they weren’t the last family that has, or will touch my life and change the way I look at things.  There have been many more since.  Each special in their own way, but I thank Gracie for teaching me so much in the beginning that I can now pass on to other families.  I am a better nurse, but, even more, I am a better person because of her influence.

On November 19, 2012, Gracie’s team decided she could go home with her family.  Her parents were taught to manage her care and she was set up with hospice services.  Gracie had a DNR in place for no compressions or intubation, but she received full comfort measures.  We received word on December 7th that Gracie had died peacefully.  While we’re all sad that Matt and Brejida did not have more time with Gracie, we are grateful for two months they had getting to know and love her.  And we’re grateful we got to know them and be a part of their community.  Sharing in the celebration of her life was a privilege.  Just as we celebrated her birth, we share in the sadness of her loss.

What I take away from my experience with Gracie, Bre and Matt is that when we help our families reach their goals, we succeed.  When we offer our support to them, we succeed.  When we touch the lives of even the littlest of souls, we succeed.  We just have to learn to measure success in a different way.  The challenge is to recognize those areas where we can make the most difference and take the first step to helping our families reach their goals and be a part of their miracles.

What would a miracle look like to you?  For Matt and Brejida it looked like this:

Gracie

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