We found out we were having a girl December 17, 2019.
The midwife called to tell me something very wrong had appeared in her ultrasound December 20, 2019. “Severe brain abnormalities.” “You’re transferring to a specialist.”
On Christmas Eve, 2019, at eighteen weeks pregnant, we found out our little girl, Isabella Joy, had a terminal condition and would not live. Maybe a few hours. Maybe a few months once she was born.
Her father and I spent over four hours at the specialist’s office, well into the evening. Mostly sobbing and not understanding the medical terms and jargon we were hearing.
I desired to be present for my other kiddos, to celebrate the JOY of the season, the mystery of Christmas, but my head throbbed from crying. I had just received the most devastating news and it was Christmas Eve. The night all children look forward to the other 364 day a year. Yet, here we were. I thought of The Virgin Mary, giving birth to a child she knew would die. My heart was heavy. My baby girl would not live. There was nothing anyone could do.
Somehow, we made it through the night, went to a drive-thru Christmas light park. Drank cocoa. Got the excited children to bed, all while holding back tears.
We decided to carry Isabella knowing she would not live. I decided to carry Isabella knowing it might be for only a few more weeks or months, and even if to term- no one could tell me the array of issues and problems she would face, if she did survive. I wanted as much time with her as I could have. I wanted to be her mom, even if it was only while she was in my belly. I wanted to know that girl and love on her as much as I could.
Between the many doctors I was seeing, I had at least one appointment every week. They wanted to monitor Isabella and me closely, making sure I wasn’t retaining fluid and monitor her growth. Seeing her during our sonograms on the huge screens was the most difficult experience each week. Seeing her perfect hands and feet, sweet little face, watching her heartbeat knowing it probably never would outside of the safety of my body- that crushed me. She was there, but she wasn’t healthy.
Her diagnosis: holoprosencephaly. Her brain didn’t form as it should have. From the time of conception, as her cells spit and she grew, something wasn’t right. No one could tell us why. No one could tell us what caused it. It’s just rare and it happens. There are varying levels of severity, but Isabella’s appeared to be the most tragic form. Even though her heart was perfect, her kidneys were just fine, and her tiny body appeared as it should to me on sonogram images, she wasn’t healthy. She wouldn’t live. I was her life support and outside of my body, her brain could not keep her body functioning as it should.
The months that followed her diagnosis until her birth were deeply transformative and equally gut wrenching. Others around me became aware of my pregnancy and it became obvious as my belly grew. What should be excitement and anticipation was often fear and worry.
I didn’t want to talk about expecting my baby. I didn’t want others to ask if it was a boy or girl or when I was due. I wasn’t registering for diapers or sleepers or lavender scented baby wash. I wasn’t decorating a baby’s room. I didn’t want to be asked about my baby because I was afraid I’d just melt into a puddle and blurt out something inaudible to a complete stranger.
I went to work. I took my other kiddos to and from school, daycare, church. I tried to connect with my unborn daughter in the best ways I could. I was hyper aware of her movements, her kicks and punches. When I felt her hiccups for the first time I cried, it meant she was swallowing, and I was grateful.
After weeks of indecisiveness, we finally sat down with our other three children and told them Isabella was very sick. We all cried together. The nine and six-year-old were visibly shaken. My three-year-old son, would walk to his bedroom and back, giving me pats on the back then returning back to his toys. Such a heavy load for a small child to bare. Death. Loss. We’d all walk this road together.
So the kids drew pictures and we talked about Isabella. We went to therapy. We read books about siblings dying and loss and heaven and grief. We were walking the hardest road we’d ever walked as a family.
Then Covid-19 happened.
Isabellas’s due date was May 4, 2020. The world turned upside down in early March, 2020. I was seven months pregnant.
Suddenly, I was alone at my appointments. Isabella’s father had always gone with me. He’d held my hand while the sonographer took photo after photo, video after video of our little girl. He’d held me while I cried. He asked questions that I couldn’t remember during our doctors’ visits, and now I was alone. The mask made it harder to breathe, while I was suffocating in my tears and heavy sobs already, it was that much harder to find any sort of peace whatsoever.
We were reassured that Isabella’s dad could accompany me during birth and delivery, but only him. The friend who’d offered to take professional photos of Isabella- the only images we would ever have of our daughter- she would no longer be allowed. My mother couldn’t attend the birth, or even be permitted inside the hospital. And Isabella’s sister and brothers would never see her alive. Not unless she lived long enough to leave the hospital. The floor fell out from underneath me.
I already felt so isolated and alone. I was in a unique place; carrying a baby that I knew would not live. While I had close friends who’d lost babies- well into their pregnancies, or even tragically at birth, I was carrying a baby I knew was very, very sick. No one I knew had ever been through this. The only way she was surviving was the life support of the umbilical cord.
Covid-19 intensified my loneliness. The entire country, even the entire world – was now grieving along with me. Lives were put on hold, but my due date was nearing, and there were still so many questions about hospital rules and regulations. Forget any sort of birth plan, this was my worst nightmare. Giving birth to a baby with a terminal condition during a global pandemic.
Isabella Joy Caballero was born via cesarean April 21, 2020 at 1:50pm. At 4:50pm she took her last breath while resting in my arms. Just as quickly as she came, she was gone. I wanted the world to know she was here, or just that she had even been here, but no one ever got to hold her or meet her besides her daddy and me. Our angel girl swept in and changed us. And I would do it all over again.