We named our daughter Audrey Grace. Audrey means “fighter”, Grace is an undeserved gift. That is who Audrey was to us: she fought for every breath. She was a gift to our family that we will hold closely forever. She was our firstborn, and always will be our first child.
We lost Audrey to a heart condition, fetal hydrops and other pregnancy complications in 2019. Audrey was diagnosed with Turner Syndrome at 12 weeks. We proceeded to find out a few weeks later that she had Hypoplastic Left Heart Syndrome (HLHS), and we were referred to Rady Children’s Hospital in San Diego for fetal cardiac care. We began planning for delivery at Rady, which would include immediate surgery postnatally, and several surgeries to follow in her first years of life.
We knew that her life would not be “easy” – her genetic condition was likely cause for physical challenges and developmental delays. Audrey’s Hypoplastic Left Heart Syndrome (HLHS) was operable, so while it would require significant and invasive pediatric care, survival was very possible. Over the course of time between 12-21 weeks, further complications developed including worsening hydrops (severe swelling) and poor lung development. These began to become the greatest causes for concern from our doctors: they presented a reality that likelihood of survival outside of the womb was worsening, not improving, with time.
It is worth noting that Turner Syndrome does not always come with these complications. The genetic condition can range in severity, as many fetal conditions do. Girls affected by this condition can go on to live beautiful, powerful, healthy lives. Knowing she could live with her set of known fetal conditions, we personally decided that – if Audrey’s heart was still beating – we would be in her corner with her.
Audrey passed away at 21 weeks, after weekly doctors appointments and many specialty visits to our team of specialists. We were under significant supervision, and it felt as if she was surviving the odds stacked against her with every week that went on. Our team recommended preparing for delivery, as we would deliver as early as 24 weeks.
We were shocked at the news of her passing at our routine visit. Our prayers felt unanswered, and our world was rocked. This is not unique to our story – and our hearts are with all families that face this news and the wake of emotions that follows.
After 55 hours of labor, Audrey allowed us the chance to hold her this side of heaven. She taught us how to love in the face of fear, and that we could be parents – no matter what circumstances our child faced.
We carried all of the emotions that parents of pregnancy or infant loss face, and wow… what a roller coaster it is! It is possible (and normal!) to feel all the complexities of joy and pain, love and heartache at the same time. As a parent of fetal or infant loss, you experience physical pain, emotional pain, and also physical connection and emotional connection with your baby.
Looking back, we experienced trauma following medical care that we would have to unpack over time. We walked through grief for the days, months and years to follow. We couldn’t sleep. Sometimes it felt hard to breathe. We laughed and cried and walked and talked and sat in silence. We were angry, questioning and empty. We also had moments of overwhelming pride for our daughter, joy, thankfulness for memories made with her in the womb (hiking Yosemite and ocean swims included!), gratitude for her name, and confidence knowing all that she taught us and means to us.
We felt all 5 senses through birth – and yes, even stillbirth! Seeing, feeling, hearing (silence), smelling, touching. These senses allowed us connection that we are so grateful for to this day. These senses of course are cause for sadness and grief, but they are also evidence of our child here on earth that we’ll hold forever in our hearts.
Reflections for parents
I have spent years guiding others through reflecting on their child, their story and their loss. I am always blown away by each parent’s powerful story and reflections that I am lucky enough to learn from.
Every path through grief and life post-loss is unique, so these reflections are universal and meant to be a guide – in the end, I believe as you look inward and toward your guiding principles, there is incredible insight on how to move through your current season. A few universal ideas in navigating the period immediately after pregnancy or infant loss:
- Ask and guide your close circle of family and friends on how to support you. They will need some direction, and simple asks will go a long way.
- Find a few ways to honor or hold your baby’s memory: ultrasound photos, hospital stays, birth or NICU items, clothing, books, a journal, family photos, art, jewelry, a poem or verse, to name a few.
- Give grace to yourself and your partner, and confront guilt. In most circumstances when a fetal condition is present, there is nothing that the parents could have done to change the outcome. Remember that you are a team. Remember that no one is to blame for this incredibly difficult set of circumstances that your child has faced. Remember that, together, you are stronger.
You are a parent. You’re a mom. You’re a dad. You always will be. This child made you one.
This child is irreplaceable. Time will pass and family dynamics may change, but no future child or thing will replace the unique fingerprints and footprints this child has made on your hearts and in your lives.
Your baby is part of your story, and your story will touch and change lives.
