Terminal Prenatal Diagnosis, Infant Loss & Thoughts on Grief | True Story with Rebecca Shrader
In this week's Real Stories of Loss, Hope & Healing I am honored to share an interview with Rebecca Shrader, a high risk OB sonographer with two living children here on earth and two in heaven. You can get to know Rebecca a little more over on her blog: Afflictions Eclipsed by Glory or on Instagram: rebecca_shrader.Rebecca, thank you for sharing your story and expertise with us. We are so grateful.
Hi Rebecca, tell us about yourself.
I am a sonographer at a high risk OB clinic in Durham, North Carolina. I work full time and have been here for almost 10 years. I have a biological daughter who is 4 1/2 and an adopted son that's 6 1/2. I am born and raised a North Carolinian and would never live anywhere else. We are quite busy during the week with school and after-school activities but on the weekends we like to relax, travel to see family and play.
photo by kelsey nelson
Rebecca, will you tell us about your loss?
In 2013, I discovered anomalies on my firstborn at 10 weeks by scanning myself one Monday morning. She was diagnosed with Limb Body Wall, and her findings were: spine curved at 90 degrees, heart pulled into the abdomen and most of her organs outside of her body. We still don't know for sure if that's her correct diagnosis, because it didn't fit neatly into any category. We knew it was probably fatal in the first trimester. We carried her to term, while blogging throughout the pregnancy for family and friends. She ended up stillborn at 29 1/2 weeks. Three months later, I was pregnant with our rainbow baby, Lydia and in the process in Ethiopia to adopt our son, Aben.The second loss came one year after Aben was home. I found out I was pregnant and at 8 weeks discovered again this baby also had a fatal anomaly by scanning myself. This time, we were certain it would be fatal. There would be no surprises. Layla had acrania, which is similar to anencephaly. The only thing to do was enjoy the time we had with her here. We didn't tell the kids until I was showing about 20 weeks along. We ended up pursuing organ donation, but she never got the chance as she was also stillborn at 36 1/2 weeks.
What has surprised you about this grief journey?
I am surprised at how differently I have been able to deal with each loss. The first loss was devastating, but I was back at work within 6 weeks of losing her (and being in the OB clinic I was a patient in is the ultimate PTSD). I went to baby showers while I was pregnant with Cora and even 3 weeks after losing her without much sadness. I grieved and then felt pretty good when I got pregnant with our rainbow three months after losing Cora.With Layla, everything was so different. I was angry and bitter during the pregnancy with her. I did not attend the many showers I was invited to. I still have yet to go to a baby shower and it's been a year since her death. I went back to work 9 weeks after losing her and it was miserable and too soon. The entire year after her death, I was in survival mode and grief brain persisted a lot longer this time than with Cora. I ended up getting on anti depressants because the cognitive fog and anger I was experiencing was affecting my job and everything I did. I don't even know how I survived 2018. I'm only just now beginning to feel like myself-thanks to the meds.
What was the most meaningful thing done for you?
The most meaningful thing done for me during both losses is just when friends and family remember our girls, or tell others about our girls even when it has been years. I have been given so many meaningful pieces of jewelry that it's hard to keep count. So many people loved and cared for our babies even though they never took a breath on earth. People have done things for us without asking if we needed it.Our small group has forced us to go on dates and even arranged and paid for them so we don't have a choice. Our in laws planned our first funeral, since we were grieving in the hospital. So by the second time around, we planned it before we even delivered. People have gone to their graves and left flowers on their birthdays and sent us texts/cards to let us know they're still saying their names.We easily raised over $7,000 to put two Cuddle Cots into a local hospital in our girls' names for other families to spend more time with their babies. I have friends who work at that hospital that will send me messages telling me how grateful the parents are to have it.
What is one thing you wish people would ask you?
I wish people would ask me to tell them about Cora and Layla when the subject comes up in conversation. When I have to awkwardly admit I've had two losses, I'd like for strangers to ask their names and ask me to tell them about them. I love talking about the girls. For the people who know us, I'd wish they'd ask: How can we celebrate/honor Cora/Layla on their upcoming birthdays?
What advice would you give to someone who has a loved one grieving?
- Mostly be with them with no expectations.
- Be ok if they don't want to see you right after or even months after. Keep offering.
- Keep up with them months and years later; they will feel abandoned.
- Don't ask what they need, ask directly if they need ___ (meals, cut their grass, clean their house, pay a bill, babysit their kids, etc).
What resources have been the most encouraging or helpful to you?
Online support groups have given me a way to openly talk about and post pictures of our girls. While I was dying to show them off to people, the general public wasn't necessarily the right group. My girls had defects very visible in pictures. The moms in the online support groups didn't care. They were so encouraging and made me feel like my babies wouldn't be forgotten.Sometimes days would be very hard at work or with family/friends and I needed an outlet of women who GOT IT. The online support group of women I've had have been truly amazing and I wouldn't be where I am without them. Some I've met in person and some I haven't, but that doesn't even really matter because I'm able to talk to them more than I have with people face to face.
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Were there any bible verses that brought you comfort & hope?
Jesus wept. John 11:35
I consider that our present sufferings are not worth comparing with the glory that will be revealed in us…In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans. Romans 8:18; 26
The righteous cry out, and the Lord hears them;he delivers them from all their troubles.The Lord is close to the brokenheartedand saves those who are crushed in spirit. Psalm 34:17-18
How do you honor or celebrate your daughters?
We visit Cora and Layla's grave, put new flowers down and for their birthdays we attach a balloon and we all sing Happy Birthday to them. We remember them in many ways throughout the year.I still blog about them every chance I get and encourage people to give the blog out to their friends who need it. The blog is also being used as a resource at Duke's palliative care group. Read Rebecca's blog: Afflictions Eclipsed by Glory here.
What encouragement would you give to another grieving mom?
- Grief is a rollercoaster. Don't have any expectations of feelings. You will be devastated one day and not even think about it the next.
- Don't let anyone make you feel like you aren't grieving appropriately.
- Do whatever you can in honor of that baby. Plant a tree or flower that is THEIRS. Buy yourself a necklace with their name or ask for one for Mother's Day.
- Ask for help.
- No matter the circumstances, have a friend/photographer take pictures at the hospital when you deliver.
- Hold your baby as long as you can and ask for a Cuddle Cot to give you more time.
- If your baby is older, write down every memory soon after your loss so you don't forget. Get hair clippings, foot and hand prints.
- You will grieve this baby until the day you die.
