The day Charly was born was the worst, most traumatic day of our lives. most people who can say, "childbirth was tough, but it was worth it." November 6th was the day my baby almost died. the day i found out my body had been slowly killing her for months unbeknownst to me. Every time i share her birth story i become a little more accustomed to the trauma. I can sit in it a little bit longer, push the bruise a little harder.
Charlotte Josephine Pappas was born at 7:21 PM on 11/6/18 via emergency C section. I was 40 weeks and 2 days pregnant, and had been anxiously awaiting contractions. I had a smooth pregnancy with consistent "everything looks perfect" reports at my weekly checkups. In the days leading up to delivery I had felt decreased movement, but didn’t get worried until that Tuesday when I felt no fetal movement at all. I called the OB and they had me come in to get a non stress test. They monitored me for about 45 minutes and found that her heart rate was dropping from about 155 to 90 every time I had a contraction. Finally they sent me over to L&D to be monitored for a longer period of time. Once I was admitted, the on call doctor immediately said he was going to begin inducing me. During this time her heart rate would continually drop during contractions then increase afterward. About an hour later, the doctor broke my amniotic sac. This is when things took a turn for the worse. Tarry meconium began flowing everywhere and didn’t stop for more than 30 minutes. The nurse kept saying "this isn't right. this is not normal." and the doctor kept shushing her. I joked that they should have broken the sac in the shower and the nurse gave an unsettling nervous laugh. At about 7PM Charly’s heart rate dropped to 30bpm and I was rushed into the OR. She was born at 7:21, but we had no idea. The OR went from the loud bustling of doctors and anesthesiologists shouting orders to being completely silent in a matter of minutes. Someone whispered a coarse “congrats...” which confused me because I never heard my baby cry or even whimper. No one said a word during for the next 45 minutes. It wasn’t until I heard the stapler that I realized the surgery must be over. But where was my baby?
Finally someone came behind the curtain and told us that our baby was born with an Apgar of 1 and that the only reason she scored that high was because she had a very faint heartbeat. She was intubated and on a cooling blanket. her apgar had gone up to 4 and They were transferring her to University of Maryland NICU to be put on the hypothermia protocol. The nicu head nurse told us that she's seen babies worse off do much better, and babies better off do much worse. she was an unusual mix of hopeful and hopeless at the same time. She had a sobering look that seemed to say "she could die, or she could be fine, but i've seen both."
In the recovery room, I stared at the clock and cried. Andy paced. As the minutes passed like seconds, we felt as if we were in an alternate reality where time was moving in fast forward, yet we were frozen. It was like living in a movie montage. nurses came and went, typed on computers, checked my blood pressure, adjusted my pillows. They moved at hyper speed while andy and i were in slow motion. I distinctly remember watching the minute hand fly around the clock in awe that it wasn't the second hand. maybe it was the drugs, maybe it was shock. We were stunned, exhausted, and terrified out of our minds.
When Charly was on the 72 hour cooling protocol, everyone was very positive about Charly’s outlook. “Babies are so resilient.” “She might surprise us!” Doctors and nurses boasted about the healing effects of lowering her body temperature to 32 degrees Celcius and how her brain was regenerating its damaged cells. Neurologists touted about brain plasticity and ensured us that even if her brain was damaged, other areas of the brain could take over and she could lead a relatively normal life.
On Saturday November 10th they slowly began raising her core temperature by .5 degrees per hour. By the afternoon she was fully warmed. Doctors came and went, analyzed her reflexes, frowned, said “just wait and see what she does” then walked away. The next day she had her MRI. This was the moment we were waiting for. The one test that would determine Charly’s future. The next morning was one of the hardest we faced. The neurologist explained the extent of her brain damage; she had Hypoxic Ischemic Encephalopathy (HIE) and based on the severity, she had been losing oxygen intermitently in utero as well as at birth. Words like “global damage” “gray matter” corpus collosum” “basal ganglia” and “irreversible” swirled in the air as we choked back tears. Cerebral palsy and tracheostomies, quadriplegia and gtubes. 24 hour nursing. Shortened life expectancy. The neurologists were amazed that she even moved based on the images. Andy and I sat stunned and heartbroken. How could the most perfect looking baby have so much brain damage?
As time went on, our definition of the “worst case scenario” changed. It started as arm braces for walking and learning sign language, then went to using a wheelchair and needing adaptive technology to communicate, but soon landed on merely being cognizant of the world around her, even if she couldn’t interact with it. As the weeks went on, doctors and specialists looked sadder and sadder. They explained time after time that Charly would never do more than what she's doing at this moment. The unintentional looks of pity deepened as Andy and I researched, advocated, and pushed for answers. We got second opinions, third opinions, more tests, more bloodwork, more EEGs, more MRIs. Everything looked bleaker and bleaker as we tried to find a cure for our Charly. Soon all our interactions with doctors and specialists included discussion of quality of life and withdrawing care. We were told that she was going to die at some point, and if we let her die now it would be easier because we wouldn't be so attached to her. This obviously didn't sit right with us. we still had hope that she'd be more. do more.
After awhile, we just stopped. Stopped looking at Charly’s shortcomings. Stopped comparing her to neuro-typical babies. Stopped wondering what her future would look like. We haven’t given up hope and we never will. We will always research, advocate, and push for everything Charly needs and deserves. But at some point we simply began to enjoy Charly just the way she is. We laughed at her silly faces and savored the smell of her hair. We loved her relentlessly everyday regardless of how she scored on developmental exams. We chose to cherish every single moment we have with her, not knowing when it might be the last. we now know that God’s plan for Charly may not be to have a full, healthy life like most children. We don’t know how long we will get to be her mommy and daddy, but we do know that we are going to love her with everything we have for as long as she lets us.
a lot of people don't want to talk about death, particularly infant loss. and i get it. it's sad. depressing. negative energy. people want us to be positive, to be hopeful. but for us, Charly's eventual death is a fact of life. it's a looming presence in every room of our house, our constant companion as we lie awake at night wondering and worrying. we have to think about and talk about death, because it's not going anywhere. not addressing it doesn't make it any less present. discussions of death are as common in our house as "hey, I emptied the dishwasher." we say things like "when charly dies," or "i can't believe she's still alive." we marvel at her resilience and strength to live while at the same time sorting through our grief and depression.
if someone told your your house would burn down sometime within the next year, you'd probably have daily anxiety about the fire. it's the same with charly. we know the eventual outcome, but we don't know what will spark the flame. so we've installed sprinklers, purchased flame-retardant curtains, and we're studying fire safety as if our life depends on it. metaphorically speaking, of course.
You wouldn't ask someone with stage 4 Lymphoma to not discuss and plan for their death, so why should we be expected to remain mum on the topic as well? The fact of the matter is that Charly's brain is severely damaged. There are no areas of her brain that remain untouched. There is no brain plasticity for her, no regeneration. there is simply deterioration. day by day, bit by bit, her brain is liquefying before our very eyes. As time goes on, her brain misfires more and more with uncomfortable seizures. there is no amount of singing, reading, or healthy fats that will make her brain do anything different. we still do all of these things, but we do them under the notion that they will not change anything. we sing to her because we love her and we tell her stories because we enjoy spending time with her. you can say that we need to "have faith" and "trust that god has a plan" and we do. but god's plan doesn't always include a miraculous healing. sometimes god's plan is for a baby to die a peaceful, loving, pain-free death. We don't understand why, but just because we've accepted Charly's imminent death doesn't make us any less Christian or faithful. we rely on God everyday to help us and her get through. Everyday I wake up to her alarm going off wondering if she needs a suction or if her heart stopped. Every night i kiss her and tell her i love her knowing it may very well be the last time her face is warm. I suppose this sounds depressing or anxious, but i do it out of thankfulness. it's an opportunity for me to thank god that we have another day together.
On November 17, 2019, our life changed yet again. Charly passed early that morning in our arms. we wished we could have her for the rest of our lives, but god had other plans. what began as a journey navigating life with a special needs child, quickly turned in to navigating life with a dying child, and now life without charly. we miss her everyday.