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: