Infant Loss Awareness:
It seems like an oxymoron or a juxtaposition of the absolute worst kind. Why on earth would we want to be aware of infant loss? I myself never dreamed of having to be "aware" of such a thing nor did I ever conceive that I would experience it.
When I was 22 years old the only thing I knew about infant loss was miscarriage or sometimes late miscarriage. My mom had one when I was 6th grade. A girl I worked with in high school had a baby die in her 8th month, and she had to go into labor and birth the infant. I remember the horror of the older women, the mothers and grandmothers, remarking she had already had a shower and the baby's room was completely decorated and waiting for him. While I understood how awful that would be, in a sense, I had no idea the true meaning of such a loss. I did know that pregnancies weren't always perfect. I watched Grey's Anatomy faithfully and I knew there were doctors whose entire career was built around saving babies in utero and as newly. too early born preemies. I knew there were NICUs dedicated to tiny babies and somewhere I was conscious that the March of Dimes was founded to eradicate disease in children and it continued on with the Walk America to help tiny babies. As far as infant loss, though, I was fairly ignorant, until I wasn't.
I found out I was pregnant in my 2nd trimester, I was incredulous, in shock, terrified. I was not married nor in a serious relationship. It did not help to alleviate the shame I felt for letting something like this happen. I had a college degree and a job, but I was not where people usually are when they have children. I will say that Josie's father was more supportive than I had anticipated, and that was helpful. Also to my shock, was the lack of judgement when I found an Ob-Gyn. They said I was healthy, young and everything should go fine. I was not harshly admonished for finding out so late or for not being married. It was a relief, to say the least, that I was treated like any other young mother.
I think that I felt the results of the final and confirmed diagnosis so greatly because the moment I allowed myself to accept the happiness of being a mom, it was ripped away from me with two words that most outside of the medical field will never hear nor understand: Trisomy 18. I had a second ultrasound to confirm my gestation (remember, 2nd trimester, on birth control, clueless) and it presented with slightly alarming markers. Amniocentesis results came in 3 days after the procedure. I took the call in my manager's office at work. I barely remember the conversation. The doctor on the phone simply said, "I'm sorry, it's Trisomy 18, babies with this don't usually make it....." He said more things, but I felt like all the air was sucked out of the room and I became aware of sounds, (think Charlie Brown's teacher) but that was all. My face and the tears were obvious signs to my manager that the news was bad. She told me to shut down my station and go home. There may have been more words, but again, I don't remember. I remember running to the restroom, attempting to stifle the sobs and the scream I desperately wanted to let out, but it was stuck deep inside my heart. It would take months for that scream to come out, after I gained the title of bereaved mother. So I went home, I called her father. We called our families in between sobs and tears and utter despair. It was so horrendous to still feel her moving and kicking, to see my belly swollen and know that the life I was trying to build was doomed from the moment of conception. Eventually though, I had to pick myself up, go back to work and try to carry on. Unfortunately and unfairly, the world doesn't stop spinning just because one person is suffering an impending loss of the worst kind. It just keeps moving and you're expected to keep living physically, no matter how much of you is emotionally dying.
About two months later, I went into labor and Josie was born on January 29th, 2007. She struggled a bit at first, and we had decided she would be DNR, so as not to prolong any suffering she might be enduring.So little is known and understand about chromosomal abnormalities, and I refused to have her tiny body be put through unnecessary pain. I felt that my obligation as a mother was to prevent her any suffering, and know that in her short life she was safe and protected. They rubbed her with a towel and laid her on my chest, and I stared breathless at her tiny chest, and I saw movement. I asked them to help her, almost without breathing. When she received oxygen over her face she took a big breath and uttered a kitten like cry. It was quite possibly the most amazing moment of my life, still.
At this time, I still wasn't aware of infant loss- I still had my infant, even though I knew I was already on borrowed time. She had a feeding tube and oxygen cannula. I barely remember her face without those items. I got to spend 9 days with my baby girl before I knew what it meant to lose her. It was a beautiful and sunny morning. She had been quite fussy the night before, I got up at the scheduled times to feed her, I rocked her and I held her, I put her down and tried to sleep for a bit. I will never know if she cried out, because her cries were so quiet I am unsure if I could have slept through them. I did take her to the window when we got up, and the sunlight just dazzled on the newly fallen snow, it was the 7th day of February, 207.I told Josie that the fairies made it glitter for her. Then I attempted to start my morning alone, wondering who would call wanting to visit. But when I looked at her face I realized she was struggling to breathe. The realization that the moment I had been dreading was instant, and in that moment I would have traded my life for hers, without question. I held her tight, tears streaming down my face, I begged her to forgive me. I prayed to anyone who was listening that she knew how much I loved her and that she wasn't in pain. Within minutes, she was gone and so was the person I used to be.
Her father came home, family came over. A priest came over. The funeral director took her away. That moment of handing her over to the funeral director was so surreal. I knew in that moment nothing would ever be the same. Before he took her away, I could imagine she was sleeping, I could imagine that the worst thing possible didn't just happen to me, that my baby girl wasn't gone forever. I handed her to her dad, and he meant to hand her over, but stopped for a moment and looked at her face. I stood still in fear, afraid of what would come next. The director backed off, said we could take more time. I actually said no, that's okay, please its okay. I came behind her dad and he handed her over. I went to the window and watched him put her in the back seat of a car, and drive away. I thought I knew what loss was then, Josie was gone, forever. No longer my baby to take care of, but my baby to mourn.
We went through all the motions, the visitation, the funeral. The gathering at the house. I wanted to collapse into a cave. I went for days without eating, living on water and coffee and the occasional cookie. A spoonful of soup choked me and I couldn't imagine ever enjoying anything again.
Unfortunately, the world kept spinning. Going to work was torture, being out among friends who had no idea how I felt or what I had lost was even worse. Somehow, with support, and my own sheer determination to survive, I made it through the first year, and then the years kept passing. Now, its approaching 11 years since I became aware of infant loss myself. Most days, I can mention Josie's name without batting an eye, relate her pregnancy to someone else's, even tell a funny story involving her. I can tell others the things I have done in her memory and I can always, always talk about SYS and the March of Dimes. I will passionately explain why funding for research is so important and I will recall my friends' stories who I have found here, and remind others when they forget why its so important. I advocate and I fight so that people are more aware, but perhaps won't be so from firsthand experience.
Almost 11 years later, I can say that I survived. I even had the courage to continue mothering, with the birth of my Rainbow Baby, Abigail, who is 8 now. I will always wonder if she would be different if she grew up with her big sister, wonder if I would be different, wonder just how crazy two little girls could make me. Most of all I wonder if I would have any clue how precious tiny lives are, and what a scientific miracle a healthy live birth really is. I hope that this month, awareness spreads not for the purpose of pity, but for the purpose of action. For knowing that not every birth story has a happy ending, and pledging to help change some of those stories in the future, while being supportive of those that can't be. I would like to end with a quote, one I wish I had found at the beginning of my journey, so I would know I didn't have to apologize for falling apart, and while my gut wrenching and awful feelings of despair might be temporary, a sustainable yet prominent void would always exist within me.
I read this through tears. There is no question that Josie felt only your love and goodness in her too short time with you. Thank you for sharing that truthful quote and for continuing to bring awareness through sharing your sweet Josie.
Oh Brandi, I'm so sorry. I imagine you standing at that window the snow and glitter from the fairies... your heart breaking into a million pieces. Just reading that made my heart break for you. I know you know this.. but I'll say it anyway... Josie only knew and felt your love. Every bit of your love. Thank you for sharing Josie and your story with us and with the world. Josie is leaving her footprint in the hearts of every person who hears your story.
Hugs my friend,
Hugs and love dear friend!!
Brandi, thank you for sharing Josie's story. I am honored to know you.
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