SHARED BY ANNA PRELL
I am a 31-year-old Irish girl and mother to Maria. Maria passed away on Christmas Day from complications related to Turner Syndrome. I live in Heidelberg with my very patient Bavarian husband. Our daughter was due on May 27th this year, and I chose to write her story to honor her little life and all those little lives that are mourned.
The New Normal
“Half a dozen eggs and a five-pack of grave candles,” I say to myself, watching the conveyor belt roll past. Avoiding the eyes and smiles of curious children perched in shopping trollies, I acknowledge that this is “normal” now. These are the scenes of the “new normal.”
Maria was born sleeping at 7:25 a.m. on Christmas Day, 2016. Her arms were gently folded, her feet were tucked in, and her face seemed to smile so peacefully. My husband says bells chimed as we held her. I don’t remember.
Why had her heart stopped?
When had it stopped?
How did I not feel it?
Everyone was praying—where was our miracle?
Was this a punishment for my irresponsible attitude to life in my twenties?
Or because I was more nervous than overjoyed for this pregnancy?
What about the wine I drank in Greece?
Clearly, I didn’t deserve to be a mother. Lying in bed all day, surrounded by crumpled mattress pads in the same tear- and snot-stained pajamas, it felt like I was failing at being a wife, too.
No Matter What
In my early teens, I was diagnosed with Polycystic Ovarian Syndrome (PCOS). This condition comes in many forms with many symptoms, but the medical profession at large seemed pretty convinced I would have significant difficulties conceiving. Yet there it was—a faded second pink line, right after our honeymoon. Too bewildered to care much for hygiene, I scrutinized the “pee stick” at the kitchen table! My husband politely moved it to one side and said gently, “I think you are pregnant, darling.” It would take three weeks, a blood test, and an ultrasound for me to believe the news. I was shocked and nervous, while he wanted to "hug the world" (his words)!
At ten weeks into our pregnancy, I was still diligently adhering to the rules of what I now call “the twelve-week syndrome” and keeping the news about our “Kleine Bohne” (Little Bean) to ourselves. God forbid I might have a miscarriage and actually have to tell people! For reasons I can no longer fathom, I was convinced this is the way to handle a pregnancy. Especially my first.
It was around this time that we were due for our second ultrasound. I settled into that undignified gynecologist’s chair and proudly presented my potbelly for jelly and examination. We were all smiling and cooing as the baby seemed to wave, when the gynecologist slowly turned the screen away from us, squinting and tilting her head. She had observed a fluid build-up on the baby’s neck, a “cystic hygroma,” and explained that it can be a sign of a chromosomal issue. Everything started to move in slow motion, and a fog seeped into my brain that still clouds my thoughts today. The word “chromosomal” conjured up conversations about termination for me. I was angry and insulted that she had given us this weight of information and protested loudly, pinching my husband’s hand: “This baby is being born, no matter what!”
A Mother's Fight
The next seven weeks were a slow haze of waiting rooms, ultrasounds, hopes, fears, long phone calls, and enough tears to keep a small Kleenex factory in business. We tried to distinguish glimmers of hope in the cryptic diagnoses and increasingly cold faces.
The resolution of the images isn’t high enough.
They scare everyone with the worst-case scenario.
At least the fluid isn’t in the lungs.
At least the fluid isn’t elsewhere.
At least the heart seems ok.
At least . . .
Three days before my thirty-first birthday, we were scheduled for another scan in the prenatal clinic. The cystic hygroma had grown, and there was fluid in the lungs. The chief doctor sat in the dark room and stretched, leaning back in his chair. He rested his head back in his folded hands, and sighed with what sounded like frustration.
“So, what are you going to do with this pregnancy?”
I felt as if we were being frowned upon as parents for having the audacity to consider bringing a child with potential disabilities into the world. I begged for information about potential treatment options but was offered termination or fortnightly ultrasounds to monitor the baby's heartbeat—to find out when it stopped. I started to fear that if she made it to birth, these doctors would not work to save her. How could anyone talk like this when, just days ago, we had watched our baby play with those adorable little feet and had listened to her heartbeat?
I sometimes feel that in those moments I really became a mother and understood that “fight” we feel for our children—that same “fight” that has us loudly remember that these children existed and honor their memories whenever we can.
Searching for Help
I had obediently avoided “Dr. Google” in an attempt to keep hoping for the best, but the coldness of these doctors toward my child had left me feeling so neglected and alone that I then began to search frantically for help and information. I tried to contact hospitals and specialists back home in Ireland, begging for opinions and help. A sweet friend arranged an appointment overnight for me at a nearby hospital, where her father worked. Many of these kind doctors wanted nothing more than to comfort me. The facts, however, could not be changed: fluid was gathering in the baby's stomach; the doctors spoke about “hydrops fetalis"; heart defects were apparent.
It was very late one evening when I closed the laptop, feeling defeated. I left the room and got ready for bed, yet something told me to try one more search. Exhausted, I obeyed the instinct and found a surgeon just two hours away in a university hospital whose specialties include in-utero surgeries and removing fluid. Our story does not have a happy ending, but having the honor to meet this man was something very special. He contacted me straight away, intrigued by my tenacity, and invited me to the hospital for an immediate consultation. After that phone call, I realized the urgency of our situation. He would operate before Christmas if the situation was as severe as he suspected.
More waiting rooms, packed lunches, women with teary eyes, and bumps of varying sizes—I truly pity everyone who has ever had to wait nervously at prenatal diagnostics! I packed a small book my aunt had given me years ago, Confidence in God, and leafed through the pages for comfort. Two doctors examined our baby. Both dismissed us as “likely Turner Syndrome” and were baffled by my long journey to the hospital to hear this diagnosis again. One coughed in disbelief when I asked to see the surgeon who could treat my baby. Several forms and waiting rooms later, Professor Kohl saw us.
He was very tall, calm, and gentle. I felt great comfort in his charismatic presence, yet his expression was grim. The office was filled with heartfelt thank-you cards, letters, and acknowledgements of all the little lives he had saved. His suggestion was to drain the cystic hygroma and place shunts in each of her lungs to allow the heart to develop normally. He was perfectly clear about our baby’s slim chances of survival due to probable underlying genetic conditions. He had operated on children this young before but not with this much fluid.
Taking a Chance
The decision of whether or not to operate was killing me. Was it too soon, and were we putting her life at risk? If we waited too long, would her heart stop before we could treat her? What if the fluid went away of its own accord, like those miracle babies on the internet? I asked my husband to choose, but Professor Kohl insisted that as the mother, I was “the boss!” A kind pediatrician addressed us as “the Prell family” and asked us to explain why we felt the way we did. He described the worst-case scenarios to us, should our little girl make it to birth. The pediatrician, surgeon, and a young medical student listened intently as I explained our sad journey to this point—how we valued all life and would not stop at anything to save our child.
We went for a final scan of the baby. I had stopped watching the previous scans, as I found them so upsetting and negative, but this time I watched. The professor explained how enormous the cyst had become: it was larger than her little head. We felt like we had no choice anymore. If her chances of survival were zero, then operating would at least be slightly more than zero, and it was worth a shot.
The small, emotional gathering in the now-crowded professor’s office had reached its verdict. Each of us hoped that this would be a story in the newspaper with the happy ending, “Professor Kohl saves child at record eighteen weeks with in-utero operation.” I signed the forms, and we drove home.
We now had to face the real possibility of our child dying. My husband mustered up the strength to ask the ubiquitous Dr. Google about the legalities in Germany of burying miscarried and stillborn children. The gender of the baby was supposed to be a surprise, but if the child really did have Turner Syndrome, then she had to be a girl. Growing up, I had often prayed to St. Maria Goretti. I rested my head on my husband’s chest, leaned back on the kitchen table, and sobbed as we named her Maria.
We spent two days between home, the motorway, and the hospital canteen waiting to be admitted for surgery. I will forever be grateful for the kindness of everyone we met at that hospital. They let my husband hold my hand as far as they could, and then we kissed goodbye. Petrified for myself and my daughter (and hungry and wondering if I should have peed again before all this started), I was wheeled into the operating room. Professor Kohl arrived with his signature, colored surgical cap. Tearfully, I choked out my thanks to him—he was the only person who would give my baby a chance, even if it was slim. He gently squeezed my calf through blankets and said he would do his very best. “The belly is mine,” he joked sweetly, as he found Maria on the screen and gave the signal to the anesthetist. It felt like a hammer hit me, and I went out, thinking of my wedding day—and for some reason, also the Crucifixion.
Blurry-eyed in the recovery room, between undignified vomiting episodes, I tried to ask if anyone knew if the baby was awake now, too. I was terrified to move in case I went into premature labor! Eventually, a doctor arrived and told me the professor was very satisfied with the operation and that the baby was ok. Soon, Professor Kohl, my hero without a cape, arrived and showed me images from the operation where her little head was visible again.
(He offered to call my poor husband, who was waiting patiently in the café, when I realized I didn’t know his number! I made a point of learning it that week, you know, for emergencies!)
At 11:30 a.m. on Christmas Eve, we were called for another ultrasound. Professor Kohl was unusually punctual, and it looked like he had come in on his day off to check up on the baby. My husband pushed my wheelchair into the examination room while we joked about how old I felt. We were nervous the fluid might have started to build up already, but we had no inkling the news would be even worse.
“Did you feel the baby move?” the professor asked quietly as he set up everything. I hadn’t, but she was only eighteen weeks. She looked oddly peaceful on the screen. And then just four words shattered our little world, four words that have broken so many hearts
“There is no heartbeat.”
Scars of Grief
The friends I meet annually in Dublin on Christmas Eve were wondering where I was. I had planned to announce my pregnancy to them that night. Instead, I had to announce that I had been induced and was waiting to deliver my daughter, stillborn.
The coffin was so tiny, there was barely room for the lilies I had requested. It felt as if my heart would burst, and I howled, a primal wail that I feel all mothers must release when faced with their dead child.
My faith was shattered, and I no longer wanted to live. I struggled to distinguish jealousy from sadness as our friends’ bumps and babies continued to grow. I struggled to understand that my husband grieved just as deeply, albeit differently. I hated my body, missing my bump while trying to lose weight. I was so scared that our families would talk about other grandchildren and great-grandchildren but not about our Maria. People who had been there for us during the pregnancy were now resorting to strained small talk or painful platitudes.
Yet I was also granted comforts in this horrible trauma. I got to meet my Maria. I got to honor her with a funeral, a dignified burial, and a beautiful grave. My husband never left my side, took care of all the practicalities as well as a postpartum wife, and—maybe most importantly—helped me find my faith again. I found a new empathy for those who are grieving, which I can only hope brings them comfort in turn. The kindness of others was overwhelming, especially within the community of mothers who share this unique pain. I had two loving families and wonderful friends doing their best to get us through this, and remembering their “little peanut”—some of whom had not even known we were pregnant. I learned to pray again and even got the occasional manicure (purple, for Turner Syndrome Awareness).
I do not believe I am out of the trench that is child loss. I fear I may never be. For now, I try to make this trench as comfortable as possible. I carry precious memories in my mind and keep pictures in butterfly frames to decorate the trench walls. Words of solace let in some light:
I have some fine embroidered white silk left over from her burial—instead of a Christening gown. I mother a grave because I cannot mother her body. I write to her and about her because I cannot coo at her cradle. I carry a locket because I cannot carry her. I talk about her all the time because, well, don’t you talk about your children? My war cry is a shout for awareness—for child loss, for Turner Syndrome, for hydrops fetalis, for in-utero treatment options, for “invisible motherhood.” My war wounds are two faint scars below my belly button that fill me with both pride and heartache.
And yet somehow, in this trench, we do get up. We get showered, go to work, and go grocery shopping. Except we also buy grave candles.