We’re a motley group - family members as diverse as night and day. Some are pastors, some have piercings and tattoos, but drawn together by love. We squeeze into a tiny area like the cliché “sardines in a can.” Despite several waiting areas, we’re in the room just before you enter the Neonatal Intensive Care Unit. There’s a glass wall with a nurses’ station on one side, and glass doors that open to the actual NICU.
There’s also a large shiny metal tub for scrubbing hands before entering NICU.
We gather at the appointed time, but the surgeon is late. We pace, glance at our watches, make light-hearted attempts at mundane conversations. Staff gather behind the glass wall conversing, words we can’t hear, they cast compassionate glances in our direction.
Through the glass doors, the first incubator you encounter is Angel’s. This is her second surgery in her short month of life. During pregnancy, tests revealed my daughter’s baby had Down Syndrome and a defective heart. Termination of the pregnancy had been hinted, but not blatantly recommended.
Abortion wasn’t an option. This baby was never viewed as anything but a gift from God.
Down Syndrome is the least concern for my granddaughter, Angel. Her heart condition is more severe than anticipated. She’s also undergone surgery for a blocked intestine. Her tiny body retained fluid, causing her to bloat. She looks pitiful!
The month filled with anguish and prayers as Angel’s condition deteriorated. Medication hasn’t worked. Surgery has been scheduled to insert an intravenous access to start dialysis. It’s a last attempt to save her life. We’ve been told the risk is high for Angel in her fragile condition. We choose the procedure, desperate to keep her with us.
Because she’s so fragile, she can’t be moved for surgery. Surgery will be performed in NICU. Less critical babies are moved to other rooms. Parents whisk past us, unable to meet our eyes.
A young doctor enters the room, smiles, shakes hands, introduces himself. He’s the dialysis specialist. He’s upbeat, positive, optimistic. We watch as he examines Angel, studies her chart. He doesn’t seem as optimistic as he exits the area.
A nurse steps in to tell us the surgeon has been delayed in another surgery. Her eyes are kind, her voice gentle as she asks if she can get us anything.
Concern mingled with sadness fills the atmosphere. We all cope differently. Some mumble prayers, some softly weep, others make nonsensical remarks and jokes, some hug and cling. We are family! We care.
The surgeon arrives in hospital scrubs, a mask dangling around his neck. His exhaustion is evident. “Who are the parents?” he asks, his eyes sweeping over us.
“We are.” Geoff and Denise say.
“Do you have other children?” He appears detached, lost in thought. An odd question, we think.
“I have four, he has five. Angel’s our baby together.” Denise’s voice is full of emotion.
“My suggestion is to go home, love your children. Your baby’s been through too much. This procedure is too risky with no guarantee of success. Think about it. Sometimes the most merciful thing is to just let them go.” His words cut deep.
I cringe, biting my lip. I want to scream, cry or both. Geoff and Denise look around the room, their eyes begging for answers or merely support.
There’s no discussion, for it has all been discussed and decided before we arrived. “If there’s a slim chance it’ll help Angel, we have to at least try. If we don’t, we’ll always wonder.” Denise and Geoff speak together, their hands clasp in unity.
The surgeon’s sigh resonates in the stillness. “I promise I’ll do my best.”
We move as one entity as close to the glass doors as possible. Preparations made, the surgeon begins, surrounded by nurses we’ve come to know and love. Was it minutes? Hours? Periodically eyes look up to meet ours with sadness and compassion. A collective shudder moves through us as bloody gauze drops to the floor.
Finally the surgeon stands erect, drops his mask and looks in our direction. We hold our breath as he removes his blood covered gloves.
He steps through the door, his weary eyes full of tender compassion. He embraces Geoff and Denise, his head shaking in sorrow. “I’m so, so sorry. I couldn’t get a vein. I tried several times. I tried.”
Angel’s fragile heart had enough. God defines miracles. For Angel, it was going home to heaven.
**True story dedicated to the amazing doctors, nurses and staff at Phoenix Children’s Hospital who made this journey with us.
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