On Father's Day, 2021, we found out we were expecting our first baby. We were so excited! But a few months later at our 20 week anatomy scan the doctor found an concerning problem. Our baby was diagnosed with bilateral multicystic dysplastic kidneys - a terminal deformity.
In a single day we went from expecting a healthy baby to carrying a baby with a diagnosis that, when Googled, only came back with answers like "fatal" or "not compatible with life." We were devastated & consumed with grief. Even if our baby survived their time in the womb, they would need significant medical intervention to stay alive. And there was a chance they might not even make it that far. We leaned heavily on our faith and our community of friends and family. We maintained a stance of positive hope even though our baby's odds were not good. We prayed and asked God to completely heal her. We had faith, and we had hope. But we were still scared out of our minds.
Less than a month after that diagnosis I (Ally) was admitted to the hospital for complications. It was Halloween, and the leaves were just turning their vibrant colors. I was diagnosed with half a dozen preterm labor-related complications, and delaying the birth of our baby was no longer an option. After five grueling & lonely (covid restricted) days in the hospital I went in for an emergency C-section. We found out it was a girl, and we named her Gemma Hope because of the hope that we had in her survival. She was 1lb 3 oz, 11 inches, and had just turned 23 weeks gestation a few hours before. She was four months early from her due date. Her eyes weren't completely formed - they were still closed - but she had tiny eyelashes. Dark hair on her head like mom and dad. She was rushed to the NICU and put on life-saving ventilators and medications.
We got to see her for the first time later that afternoon. We visited her every second we could, but it was difficult to listen to the beeping of the monitors and the cries of the other little babies in the NICU. I hadn't even gotten to hear my baby cry - she had tubes coming out of her mouth. I wasn't allowed to even touch her because she was so, so frail. We tried to rest, but it was hard being away from her knowing that she was struggling to overcome every minute of every day. The next day, my husband and I were woken up at three or four in the morning to one of the doctor's telling us Gemma wasn't doing well. We hurriedly put on sweatshirts and slippers. I vividly remember it was so cold in our room at that hour that my teeth were chattering as Kyle helped me get into a sweatshirt and pants - it was probably below 60 degrees. My wheelchair was wheeled down the halls of the hospital as fast as we could go. The sweet doctor explained to us that her heart was failing and there was nothing they could do to reverse the effects. Her heart was failing because her kidneys couldn't control her electrolytes well enough, and the heart's electrical pulse was slowly weakening. It was time to say goodbye to our precious daughter. Our child that had only been inside of me for five months, and out for less than two days. Wrapped in a blanket with tubes and cords dangling out, I held my daughter for the first and last time.
We spent several hours holding her, my husband and I. We sang to her the lullabies we were only just beginning to learn. I told her the names of the people she would meet in heaven. I got to listen to her heartbeat.....it was slow, staggered, but still there. We took photos and videos. Her tiny hand gripped my finger tighter as she rested on my chest. Saying it was a brutal time does not even begin to explain the emotions and the pain.
We wailed, and we finally said our last goodbyes. I let the funeral home take her tiny body out of the hospital in a carpet bag. I will never forget the heavy, aching sensation when I lowered her down into that cavernous bag (meant for full-term babies) and pulled my hands out empty. My feet wouldn't move. We head was spinning. My entire body ached to never let go. This wasn't right. This wasn't how it was supposed to be.
We left the hospital that day and all the leaves had already fallen from the trees. It felt like we had completely missed an entire season. We held a memorial service for Gemma a week later. Friends and family arrived from all over the country. We began the exhausting process of trying to survive the outside world that still kept spinning. I pumped my breast milk and donated it to a local family. I was off work for two months because of my surgery and I struggled with sleep, depression, and substance abuse. Almost as soon as I went back to work I had to quit that job and find something different because I needed a change that would be able to accomodate my current health struggles. We attended an in-person group therapy from KinderMourn in Charlotte and met other parents who had gone through similiar losses recently. I read every book I could get my hands on about infant loss, grief, faith, death, and everything in between.
And this is where we arrive at today. As I write this it has been 10 months since we said goodbye to our little "babu". We are still in a season of "grief", but it looks different than it was 10 months ago, even 2 months ago. We have tried all kinds of counseling, books, and websites and haven't stopped, and that is what this nonprofit is all about. In memory of our daughter and all that she means to us.....with all of the love that we have stored up in our hearts, we want to share it with you. We hope that you will feel blessed, and most importantly, find hope, through this site. We are grateful that you are here, even if it is because of tragedy.
Update: It's now been over 2.5 years since we said our last goodbyes to Gemma. Every month, every day, every season looks and feels different than the last. We've met hundreds of other bereaved families, and we say the names of their babies often. Saying Gemma's name out loud is still sometimes hard for me, her mom, to do. I get choked up and it feels awkward, but that's ok. We've learned some of our triggers, and we've struggled with many other trials since losing her. It's all still very sad, uncomfortable, and traumatic, but we're learning how to survive that.
"There is no footprint too small that cannot leave an imprint on this world"
Ally Shaw is Gemma's mother and Executive Director of Gemma's Hope