Hiroshima – that’s what I call the day that I learned the diagnosis.
It was the day after Christmas. We decided to have a 16 week ultrasound the week before in order to find out the sex. The reveal day? Christmas. It was our present to our parents. All in all, perfect timing.
The 26th, my mother-in-law (MIL) and I were planning on hitting up the after-Christmas sales and start buying all the essentials for a baby girl. We just had to stop off at the OB’s office. I thought it was a formality – all the previous visits had been short. I even told my husband not to worry about taking the day off work.
“In and out” turned into an hour wait due to a receptionist error (she never checked me in!), but I was still happy. MIL and I talked, and while we were waiting, I ran into two of my pregnant students who were in for their checkup as well. When I was finally able to see my doctor, my MIL went to go sit in the car because I was so confident that this would only take ten minutes – tops.
I was 17 weeks, and this was the first time that I heard the heart beat with the doppler. I asked the doctor a few trivial questions about grapefruit and my weight, and was preparing to leave when he said “And now I have to give you some bad news.”
My ultrasound showed a serious birth defect – spina bifida. He started mentioning other words that flew right over my head – myelomeningocele, ventriculomegaly, lemon signs, banana signs, bilateral clubbed feet, Chiari II malformation, hydrocepalus – but I was numb.
Spina bifida. So that meant that my daughter would have braces. Worst care scenario: a wheelchair. Not a big deal, right?
Wrong. He then explained the seriousness of what those words meant. Shunts. Pre-natal surgery. Brain damage. Paralysis. A catheter. Allergies. Poor renal function. Bladder and bowel problems. Pressure sores. Possible tethered spinal cord. Learning disabilities. Possible speech concerns. Possibility of blindness.
The specialists that my child would need include a neurosurgeon, a neurologist, a urologist, an opthamologist, physical therapists, orthopedic surgeon, an orthotist, and a physiatrist. Our “team” of specialists.
I felt like I was Alice, falling down the rabbit hole. And then he said it. “I know how hard you struggled to get to this point, but I would be remiss if I didn’t tell you that this is a very serious diagnosis. Most people who are faced with this choose to terminate.”
Terminate? As in an abortion? Me?
I don’t know how, but I managed to keep it together. He asked me if I wanted to see the problems on the ultrasound, and I nodded yes. I asked him write down the significant words so I could share this information with my husband – I knew I wouldn’t remember anything that he just said. He let me leave out of the back door so I wouldn’t have to face the lobby, full of pregnant women.
And then I left.
I remember that night, my husband and I were obsessively researching spina bifida. The picture for spina bifida on Wikipedia is burned into my memory – when I see it today, I feel sick to my stomach. I remember reading success stories – smiling young adults in wheelchairs with college diplomas. Sweet little babies in braces. Happy endings. But this wasn’t the future in store for my daughter. She was already paralyzed, and the prognosis didn’t seem to be very bright. I got the impression that the bilateral clubbed feet at 16 was a serious indicator that things were grim.
We managed to see a perinatalogist that Friday, but by the time we got the confirmation, we had already decided that we only had one option – to spare her from pain and suffering.
Supposedly, this was a freak accident of nature – a 1:1000 chance. Random. But I feel that blame has to go somewhere, and the easiest target is yours truly. Maybe the NTD developed that one day I forgot to take my prenatal vitamin. Maybe my showers were too hot. Maybe I had spina bifida myself? At my lowest point, I remember asking my husband to compare my butt with a picture of a person who had spina bifida occulta. He was not pleased with me interrupting his video game to show him my bare ass and my phone in his face, complete with a picture of a stranger’s butt. I can laugh about it now, but the desire to blame myself still lingers.
I even started getting superstitious. Like maybe it was fate that I wasn’t supposed to be a mother, and this diagnosis was the universe’s way of punishing me for getting an IUI.
The time between the diagnosis and termination were the darkest days of my short life so far. I don’t remember much, but the memories I do have will haunt me for the rest of my life. I would wake up in the middle of the night fearing that my husband was dead, so I’d shake him to make sure that he was, in fact, still alive. I had to take anxiety pills just to take a shower – I hated touching my body, and I was terrified to touch my belly. I remember crying before taking the anxiety meds, because I didn’t want to hurt my daughter. I didn’t eat for two days – any time I managed to get an appetite, I threw up. I watched every single episode of Kitchen Nightmares – US and UK. I remember praying for a miscarriage – I didn’t want to make this choice. Why me? Why my baby?
But I knew that if this was my Hiroshima, I still had to face Nagasaki – a three day termination.
I did find a few things to be thankful for during that time:
- my husband
- my friends
- my cats
- the timing – I found out during Christmas vacation, so I didn’t have to take much time off work
- the fact that we found out so early
- that I was able to feel my child’s wiggles and somersaults before we said goodbye
- my in-laws
I keep trying to add to that list everyday, but some days are harder than others.