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Coping with loss or life’s difficulties are like being on a small boat in the middle of the ocean. The waves come and they go. Some are small and you take the bumps with ease, I got this… no problem. Others are big and scary and they derail what you thought was going so well. You’re drowning and there’s no one there to save you. The next day, the sun peeks out, the water calms and you find yourself feeling strong and capable.
This blog post shares our story of the loss of our baby girl, Lena.
Things like this shape who we are as individuals and as parents, and it’s okay to talk about them. Please respect our decision to share this publicly. Writing about each step in this journey helped me process my emotions and ultimately cope with the outcome.
I started journaling the day we found out we were expecting, back in April. We were thrilled. Tears of joy flooded both of our cheeks, we did have a blissful period celebrating this baby and for that I am still grateful.
Looking back, I always had a very cautious feeling about this pregnancy. Because of Covid-19, my OB recommended combining the 8 and 12 week appointment into one at 10 weeks to confirm the pregnancy and I followed her suggestion. I only told a few people about us expecting as I didn’t like not being seen before sharing.
I patiently waited for the day that I got to go in to see and hear this baby for the very first time! I was alone in the ultrasound room, and I forgot what a 10 week old baby looked like so I just took the “I can’t quite tell how everything looks just by this much” like it was a doctor talking their talk. But looking back, there were so many cues from the nurse and sonographer that something wasn’t right. I went to the room and waited for my OB to come in, where she made small talk, followed by telling me that the ultrasound revealed a few markers that raised some flags. Nuchal translucency (the fluid are behind a baby’s neck) was abnormally thick, and for such an early gestational age, that was not good. I asked point-blank, could baby just have some abnormalities but make it okay? She fairly confidently said she didn’t think so.
At that moment I felt like I could throw up. I was shocked, scared and broken.
I got home and could not contain my emotions. I knew there was a long road ahead of us, tough decisions, tough conversations, tough emotions. We hadn’t loss this child. But it felt like there was “yet” to tack on to the back of that statement. For my OB to be so confident that it was not looking good, was a sign that what was coming was not going to be easy.
I wanted to go somewhere and pretend that this day didn’t happen.
About a week later, we went to the U of M maternal fetal medicine specialists, and had another ultrasound and a CVS (Chorionic villus sampling), which is where they take placenta material that they can test for chromosomal abnormalities, which yields results in 2 days.
This second ultrasound revealed a few more things about our baby I’d never heard of, and wish I never did:
– single ventricle heart
– cystic hygroma
– 2 vessel umbilical cord
Despite the mounting possible diagnosis, the sentiment here was hopeful. That the fluid around the baby could actually be from the heart defect. And that is what we began to pray for because if otherwise combined with a chromosomal abnormality, diagnosis would be fatal.
Unfortunately, what was supposed to be 2 days turned into 7. We got a call from our genetic counselor that my placenta sample was not large enough to test and that they’d need to grow the sample larger to run the FISH analysis. I was so exhausted from the anxiety that the waiting brought. I’d never felt such a weight of waiting, for answers, that we may or may not ever receive.
I don’t know why this stuff happens, but an inkling in me was hopeful that there was a reason that we didn’t hear anything yet. More time for baby to grow… more time for baby to tell us their needs. But the biggest benefit that it gave us more time to understand that we have no control over the situation, and we can’t change what the results are. I felt like this was the first step of us coping.
Time, even just a few extra days did allow for some hope to trickle in, hope that this baby could grow and live a fulfilling life.
Despite not wanting to face it, the news came and it was not what we’d prayed for. Our little girl was diagnosed with something called Turner Syndrome, a chromosomal disorder in which a female is born with only one X chromosome.
About 1 in every 2,500 newborn babies have Turner syndrome. It is present in 1–2% of all conceptions, but about 99% of affected babies are miscarried or stillborn. In most cases I’d pray that we could be that 1% that made it to full-term, but it felt like the evidence that we would miscarry was surmounting. Cystic hygromas (growth of fluid/material behind babies back/neck) are also rare, they occur in 1:4,000 pregnancies. A heart defect like ours would also require multiple surgeries at birth and into childhood.
We began to learn quickly that this baby was rare. Extremely rare. Unique, yes strong to have even made it this far…a warrior. The sentiment that her time left with us was short, was right. At 13 weeks we said goodbye to our little girl, Lena.
We made arrangements for the needed D&C and had conversations I wouldn’t wish upon anyone – about naming and cremating our unborn child.
After it was over, we both didn’t know how to feel. I felt like we had the few weeks leading up to this to prepare for it, which did help. After our initial ultrasound, the excitement really ended and even though there was a little bit of hope on days I can’t say that I believed much that we’d ever hold this baby. I do believe in miracles, I believe in the power of prayer, and I never wanted to give up. But I also believe in statistics and what medical professionals advise.
I feel grateful to have had the support of my Mom, sister, best friend and sister-in-law every step of the way. Also, every healthcare worker that we engaged with… from our genetic counselor to the nurses and sonographers. I still can’t believe that at just 13 weeks we knew so much our baby. You want to be confident in any decision you make as a couple and it was pertinent to our journey to have other people to turn to. Greg and I both confided in a very small circle of people whom we feel so lucky to have.
I also felt immensely close to God during this time. Worship music and prayer played a huge part in my reflection. I never doubted that Jesus wasn’t walking alongside us. Throughout everything God is the only constant in life – if you’re Christian let that truly sink in. Everything is constantly changing… the world, your life. But God is always your constant. He will never fail you, or say that today he doesn’t have time for you. We are his children, and just as we prayed and loved for our baby he loves and prays for us.
We decided to have a private cremation and about a week or so after the procedure it was complete. To physically hold the little keepsake urn made everything so real again. In fact, other than the day I removed it from the bag given by the funeral home I haven’t touched it. That day was one of those in the middle of the ocean.. where the waves were big. It’s the only part of this baby we will ever hold. It feels weird to have, and I don’t know what our plan is. Every time I look at it, I am reminded of the pain that we felt. We aren’t to a point yet where it can represent a celebration of her life, but I hope we do get there.
As the days following turned into weeks, I thought I would be okay to talk about our experience openly but most times the few people who know said anything, a lump forms in my throat. Even proof-reading before posting this is difficult. It’s something that I think about many times every day, and I think it will always be that way. We have allowed for our lives to go on, but at the same time nothing will ever be the same.
Everyone deals with loss differently. That’s totally okay. Maybe you’ve been here and experienced loss before, or maybe you’re here now… No matter your path, you are not alone.
And my inbox is always open.
To our Lena… young warrior, we love you.