Julia, Spreading HOPE for Sora Robin
Julia Guarino, sharing her story in memory of Sora Robin
“My husband and I got married in August 2020, when we were both 35. We knew we wanted to have kids, so we started trying right away. He was so confident we would get pregnant easily, but I worried, knowing that it starts to get harder in your mid-30s. After almost a year of trying on our own with no luck, we found a fertility specialist. Months of testing turned up no clear answers. By the fall of 2022, we decided to start down the path of IVF, and we had our first embryo transfer in December of 2022. That transfer resulted in an ectopic pregnancy, and I took some time to recover physically and emotionally. In July of 2023, we had our second embryo transfer.
Despite how long the road had been, I was confident that this second embryo would implant. And she did! At six and a half weeks, there she was, a little gummy bear on the ultrasound screen. The doctor warned us that her heartbeat was slower than they would like to see, but her growth was on track, so we would just have to wait and see. At my next ultrasound at 9 and a half weeks, there she was again, swimming around and doing flips, with a strong heartbeat this time. Again, they were a little concerned because she was measuring about a week behind, which they said was the outside edge of normal. But they told me I could officially "graduate" to my regular provider. I was so happy to go from the very clinical setting of the fertility practice to my midwife's warm and cozy office for care.
As my pregnancy progressed, our baby's heartbeat stayed strong and steady, and all my testing looked normal. I was tired, but in most other ways I felt really good, especially once I made it into the second trimester. At around 15 weeks, I started feeling the baby move. She felt like a little fish in there, and I started to relax into this hard-won pregnancy and bond with the little person living inside me. At 17 weeks, we took a trip to IKEA to pick up the dresser and crib I wanted for her nursery. By 18 weeks, we had her nursery mostly put together. We had come up with a list of names, and although we hadn't officially picked one, I started to think of her as Sora Robin.
I wasn't particularly nervous going into the anatomy scan, which we did on a Friday. Everything was going well, and we knew her genetics were normal, so I figured it would just be fun to see her on ultrasound again. The tech who did the ultrasound was friendly, and she mentioned she couldn't visualize everything so we would probably have to come back, but no one told us there was anything wrong that day. We spent the weekend sending around ultrasound pictures and feeling even more excited for her arrival in the spring.
The following Monday, around 11am, my primary care doctor called. When I picked up, she said, "I have some bad news. The radiologist called me and let me know that your baby has a condition called anencephaly. She has no brain tissue. She will not survive. I am so sorry." I started sobbing, and she told me I had a few options: I could schedule an induction or a D&E right away, I could get a referral to a maternal-fetal medicine specialist for a more detailed ultrasound, or I could choose to carry my baby until she passed away, which would likely be in utero, but otherwise would be in the hours or days after her birth. I told her I'd like the referral, and then hung up with her to call my midwife, who was driving and had not yet seen the results. She asked if she could come by my house that afternoon to check on me, and that she would do some research and talk to the radiologist before then. I left work and asked my husband to meet me at home, where we cried and came up with a lot of questions. My midwife met us there a few hours later with chocolate, hugs, answers to our questions, and a portable doppler for us to borrow so we could listen to our little girl's heartbeat whenever we wanted.
On Tuesday morning, we got a call from the top maternal-fetal medicine hospital in the area, and they scheduled us for the next day, which was the day before Thanksgiving. At that appointment, they confirmed that our daughter's brain had only developed very rudimentary structures, but they diagnosed her with a condition that is even more rare than anencephaly, called microcephalic aprosencephaly. The doctor confirmed that she was very unlikely to survive the entire pregnancy, and that if she were born alive her brain would not be able to sustain her body for more than a few days, but likely only for minutes after her birth. She described our daughter's condition as a lightning strike - just a one in a thousand chance that was likely caused by a random mutation and did not have a genetic cause; something we confirmed after her birth with additional genetic testing.
Our choices were the same terrible ones: end the pregnancy with a D&E or induction, or carry the baby until she passed away or got to 37 weeks, with extra monitoring to be sure I stayed healthy and safe. It was an awful set of choices, but I knew that what I really wanted was to see and hold my little girl, ideally while she was still alive. The best chance of doing that was to have an induction while we knew she was still alive, sooner rather than later. We decided to schedule the induction for the following week.
My last week carrying Sora, I spent most of the time sitting with her and focusing on her movements. Before bed every night, I listened to her heartbeat with the doppler and told her how much I loved her, how grateful I was to be her mama, and how much I would miss her.
On Tuesday, November 28, we had an office visit at the hospital, where I received a dose of mifepristone, to soften my cervix and start labor. The nurses made me a Build-a-Bear with Sora's heartbeat in it, which I still hold and listen to on the hard days since her birth and death. That evening, we went to a bookstore and bought a book for her; "I Love You This Much" by Sammy McBratney.
The next morning, we checked into the hospital and they started me on misoprostol, which started contractions. My midwife, our doula, and my dad all joined us there, and spent the day with us laughing and crying and telling stories as my labor progressed. By around 9pm, the contractions had started to get uncomfortable, so they placed an epidural. A couple of hours later everyone left to get some rest, and my husband and I curled up in the hospital bed together. I didn't sleep as my labor continued to progress overnight, but I still had a ways to go in the morning, so the doctors started me on a pitocin drip.
At 10:23am on November 30, I felt something change, and when I sat up my water broke, and Sora was born into my hands. I saw and felt her move, and tried to pull her up to my chest, but the nurse stopped me, because the umbilical cord was still attached. There was a flurry of activity while they tried to find her heartbeat and couldn't. My husband cut her cord, so I could cradle her against me, and I felt her move one more time before she lay still. I started shaking and wailing and sobbing. It felt like I was coming to pieces.
The next hour was a blur, but I spent it with my little girl cradled against me. Eventually, I came down to a state of calm and I got to marvel at her perfectly imperfect human body. She was such a tiny miracle. I've never loved someone so fiercely.
She stayed with us as I recovered from the epidural. Our nurse helped us bathe her and we dressed her in a tiny preemie outfit I had bought for her. We read her book to her, made hand and footprints, and took a bunch of pictures. When we were ready to sleep we laid her in a cooling cot by my bedside. We argued with the hospital until they allowed us to bring her to the funeral home ourselves, so that we wouldn't have to leave her behind when we checked out. Our nurse gave us a tiny handmade paper casket, which I held on my lap on our way to the funeral home. It was the hardest thing I've ever done to leave her there, but we had found a very compassionate funeral director who offered to cremate her remains for free because she was a baby, and I knew we were leaving her in good hands.
A week later, the paperwork was done, and we went back to the funeral home to witness Sora's cremation. We saw her tiny body one last time, and I placed her little paper casket in the cremator myself. Then we went down to the beach to read her letters we had written to her while the last rays of sun peeked through the clouds.
Losing Sora was the absolute worst experience of my life. And somehow, it was also the most meaningful. There has been so much beauty mixed up with the awfulness. I wouldn't trade anything for the time I had with my precious firstborn daughter.
In January 2024, I joined an online RTZ Hope Pregnancy and Infant Loss Support Group. It was so incredibly helpful to have that support early on in my grief journey. I am still connected with the other loss moms who participated, and we stay in touch via a WhatsApp chat and with monthly online gatherings on our own. I cherish those connections! I also attended the May 2024 RTZ Hope retreat, and it was an incredible and healing experience. I am also still connected with those loss parents who attended, and we continue to support each other as we navigate the ups and downs of grief and, for some, trying to conceive and pregnancy after loss. Honestly, I can't imagine having gotten to this point in the journey without the support and understanding of others who have been through it, too.”
October is Pregnancy & Infant Loss Awareness Month.
Our HOPEtober annual event honors all losses on the journey to parenthood.
Even though so many of us have experienced pregnancy or infant loss, or know someone who has, it is a loss that exists in the shadows. As bereaved parents, we feel isolated and alone. But together, we can shine a light on pregnancy and infant loss, helping others to live a life that holds both grief and joy.
HOPEtober Luminaries partner with us during the month of October to be an advocate and ambassador in spreading awareness and shining a light on pregnancy and infant loss. By sharing our stories we’re bringing awareness to pregnancy and infant loss, as well as the resources and support that exist through Return to Zero: Hope. As a nonprofit, raising awareness and funds are essential to our cause and support programs.
We'd be grateful if you you would consider making a contribution to Julia's fundraiser in honor of Sora Robin Your gift ensures that other parents who endure loss on their journey to parenthood have the support, resources, and community they need in order to navigate life after loss.
This year our goal is to raise $75,000 during the month of October so that we can continue spread hope and healing by providing resources and support to grieving families and their care providers.
Thank you for helping to shatter the silence around pregnancy & infant loss.