A Hospital Nurse’s Perspective

by Jessica Ormond, RN

My name is Jessica, and I had the privilege of being Kittery’s nurse after Arthur was born during their time at CMC. On my unit, High Risk Post Partum, we take care of moms who are sick, who have complications of pregnancy and delivery, and those families who have experienced the loss of their baby. Kittery asked if I’d share my version of Arthur’s story – here are my favorite memories.

I was so nervous after seeing my patient assignment for that morning in December. It is not often that we care for babies with anencephaly – and it is also rare that we care for families that choose to carry a baby with a terminal diagnosis to term. My plan was 1 – To help Kittery and Arthur have all the experiences new moms and babies should have, yet at the same time, be mindful that God had greater plans for Arthur, and 2 – Make sure I was able to hold myself together and not cry.

When I walked into the room for the first time, Kittery greeted me with a smile, proudly introducing Arthur to me. Arthur was beautiful – looking so peaceful and content in Kittery’s arms, surrounded by grandparents and big sister Adele. As I worked through the assessment and initial conversation with Kittery, I could sense she was sad, yet at the same time strong, smiling and taking in every minute of Arthur. Not sure Kittery realized this, but she made me feel at ease and less nervous.

For families going through loss, we do all we can to make sure they have everything the need. Their experience is not typical, and it is important that as healthcare professionals, we do all we can to make their stay a bit easier. We set aside a waiting room on our unit for family members. Kittery had a lot of visitors so we wanted to make sure everyone was comfortable and had a place to rest. When Kittery’s mom asked if they would be able to take Arthur outside, we made sure we got that done. I remember pushing Kittery holding Arthur, in the wheelchair through the hospital and outside to a patio area. I stayed a small distance away to give them some privacy. It was amazing to watch everyone enjoy the sunshine and take pictures with Arthur. As the day went on, we began talking to the palliative care physician about the possibility of getting Arthur home.

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When I woke up for work the next morning, the first thing I did was call the unit to check on Kittery and Arthur. They had done well over night so the plan for the day was to get resources in place so they could bring Arthur home. By early afternoon, I brought Kittery and Arthur down to the main lobby with Kittery’s mom while Artie went to get the car. It was a few weeks before Christmas and there was a huge Christmas tree in the lobby. As I took a few photos of Kittery, Arthur and her mom by the tree, it happened – the ugly cry that I couldn’t hold in anymore. Half of me was incredibly happy, but the other half was terribly sad – knowing that it was just the beginning of Arthur’s journey home.

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If you are a nurse or other healthcare professional – I’d like to mention a few important points:

  • Acknowledge the situation and don’t be afraid to talk about sensitive issues.
  • Be sure to communicate plans of care and patient wishes.
  • Try to anticipate the needs of mom and family so interruptions are kept to a minimum.
  • Ask the family if they would like photos taken.
  • Be an advocate for your patient. Some rules are meant to be broken – by that I mean if a family wants to take their baby outside, dress in their own clothes, or go on a walk, speak with managers or leaders to make it happen.

They say that nurses have that one patient who reminds them why they became a nurse. It sounds cliché but it is true – Kittery and Arthur are mine. I was reminded that having faith brings you strength in the hardest situations, that there is joy even on the saddest days. I was reminded that I have the best job in the world caring for people when they are most vulnerable. I gained confidence in my abilities to care for families during times of loss, confidence that I can help make a terrible time just a little bit easier. Thank you Kittery, Artie, Adele and Arthur for allowing me to take care of you.

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7 Months


Sending you some love, baby brother, on your 7 month birthday in heaven🎈

D-Day

July 10, 2015.

Family was in town. We were squeezing in this mid-pregnancy appointment in before heading to the mountains to have some down time with my family to break up some of our summer of traveling. We had to have this appointment at the Uptown location because there was no ultrasound tech scheduled during any of the few days I was in town at the location closest to me. My mom came along to help us with Adele, and to possibly sneak a peek at the baby and to give her an edge in guessing the gender before we told our family on our vacation.

When we got to the office, we checked in and were ushered into the ultrasound room shortly after. Artie had been prepping our young toddler for the experience and what she would be seeing on the screen. I had already been noticing movement for a few weeks and I was excited to see through the sonogram the little one whose kicks and nudges I had been feeling. We told the tech that we didn’t want her to tell us the gender, we wanted her to write it down so we could find out together later. She put the cold jelly on my tummy and started to take measurements of what she was seeing.

It happened so fast. We were not 30 seconds into the scan, and she said, “There is something very wrong.” Our giddiness turned immediately to fear. “There is a heartbeat, but something is very wrong. I have to go get the doctor. I will be right back.”

What could be so wrong?

My mind raced as I tried to think through the possible explanations. I don’t remember how much time passed while the ultrasound tech was out of the room, but it was torture not knowing what was wrong with my sweet little babe. She returned with one of the OBs from our practice, who began to tell us about a condition called anencephaly. Sometime in the early weeks of development, this baby’s neural tube did not close all the way. The skull and brain did not form properly. What the tech found in the scan was an incomplete head, not the big round orb you normally see. This baby would not have full brain function. After explaining to us about this defect, she gave the dagger,

“Your baby will not be compatible with life outside the womb. I am so sorry.”

I felt like the wind was knocked out of me. I was stunned. Heartbroken. Afraid. I don’t know if I have the vocabulary to describe the emotional pain of that moment. The only thing I could whisper to myself was, “Jesus, help.” I felt completely incapable of dealing with so much pain. Tears just poured out of my eyes, my husband’s, my mom’s. Sweet 15-month Adele sat there in Daddy’s lap quietly observing the grief.

Arthur Neale Van Sciver

Arthur Neale Van Sciver

The OB mentioned some things about folic acid and future pregnancies, and all I wanted to scream was, “This one is not over! This baby is still very much alive!” How can I think of future babies while this one is so alive and kicking inside of me? She mentioned termination because it was an option that could only be on the table for 2 more weeks. But even in the fog of grief, that was never going to be an option for a child of mine – we would not choose when the end of this one’s life would be, but we would love and nurture and care until natural death. I wasn’t able to say much, but “I will carry this baby. Please don’t bring up termination again.” My pain was so deep because my love was so deep.

That 30 seconds of a scan was all we got before being sent upstairs to Maternal Fetal Medicine, where they would conduct a more detailed ultrasound. I didn’t want to see anyone, I just wanted to go home and hold my belly and cry. But we had to walk out, tear-stained cheeks and all, of a waiting room full of people and go upstairs into another waiting room of people. We had to talk to a receptionist who knew nothing about the bomb that was just dropped in our lives. We had to sit and wait in agony since we weren’t originally scheduled for an appointment upstairs (although I was thankful they could squeeze us in on a busy Friday). We were brought back into a room that had a small couch. My mom had Adele out in the lobby, and Artie and I sat together in that room and cried as we held each other. A genetic counselor came in and asked us some questions, only for her to tell us that because there is nobody in out family history on either side that we know of that has had this condition or anything like it, the cause of our baby’s anencephaly was not genetic. We were finally sent to an ultrasound room where they confirmed what we had already been told downstairs. They showed us the head, but they checked the rest of the body too. The rest of the body? Perfect. Great, strong heartbeat. Kicking legs and active arms. Looking at it all and how active this baby was, it just didn’t seem like this was a baby that was going to die. Staring at the image of this little one, I just needed to know if it was my son or daughter. When they told us it was a boy, another wave of uncontrollable tears came. And new words. “My son. My son. I love you so much, my boy.”

I could not stop the crying on the way home. It never crossed my mind that I would outlive a child of mine. All of the hopes and dreams for this child that had been created over the first 4 months of this pregnancy were smashed in an instance.

Diagnosis day. The day I found out about my first son, our parents’ first grandson, our grandparent’s first great-grandson – news that should have been fun to share. The day I grieved like I never had before. The day my life changed forever.

But that day there was something else I experienced in way unlike any day in my life. The Holy Spirit being near and helping and guiding me in my constant tears. I knew the Spirit was near, because my first response to the news was to call out to Jesus. I knew the Spirit was helping, because there was an absolute confidence and conviction, even in the midst of compromised emotions, that every life mattered. I knew the Spirit was guiding, because while I was consumed in grief for myself and my family, for a moment I thought about the healthcare professionals who had discovered my son’s condition, and with some clarity of mind I was able to ask how their experience of this was.

The sweet women who had to be the bearers of bad news no one would ever want to hear. I ask them if I could have a picture with them so I could remember who they were and their kindness.

The sweet women who had to be the bearers of bad news no one would ever want to hear. Somehow, I had the clarity of mind to ask them if I could have a picture with them, so I could remember who they were and their kindness.

In the Christian life, during the high highs and the low lows, God is near. If we would only look. It is quite easy to acknowledge the goodness of God when things are going well for you. But what about during the darkest hours of your life? There is a line in a familiar Psalm that says: “Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me. Your rod and your staff, they comfort me.” (Psalm 23) I am so grateful I can look back at this day last year and not just see the great tragedy that happened in our lives, but that I can see the evidence of God’s nearness to me when I was most wounded and vulnerable.

I sit here a year from that day in disbelief that it has been so long. The grief is different now, and it comes and goes with less intensity as it did that day. I don’t want to go through a day like that again. I hope anyone I know never has to either. But if I do have to face something like that again, or worse, I hope the Spirit is just as near.

“The Lord is near to the brokenhearted and saves the crushed in spirit.” Psalm 34:18