*I don’t usually write posts that are drawn out for weeks at a time, but in this case, I didn’t feel it fair to take you on the roller coaster ride with me until I at least had an idea of the way the story might end. This story began on October 16th and didn’t have any sort of resolution until today.
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As of today, I don’t know the end of this story. It’s not meant to be a cliffhanger, but as it often goes, I’m unable to wait for resolution to get this off my chest.
When my grandfathers died, I carried a lump in my throat for two weeks until I finally sat down and put my thoughts to paper. I waited for the “good cry”. I wished for a release valve to rid the pressure from my heart. I hoped for pained screams to escape. Something. Anything. Just so I could feel like I wasn’t going to suffocate on the lump.
A similar situation happened when I put my sweet Libby to sleep, and again when we miscarried the first time, and then the second.
The lump in my throat is an expanding, painful balloon, inflating inside a space too small to accommodate. I need it to inevitably burst. I need that pressure to subside.
George and I opted for nuchal translucency screening early in my pregnancy to determine our likelihood of having a child with different sorts of abnormalities. The results didn’t matter. We would love our child regardless, but if we had a high likelihood of dealing with Down Syndrome, we wanted to be well researched as to be the very best parents of a child with such a condition. Within a few days, our results were in and looked flawless.
Exhale.
With nothing but positive test results, ultrasounds, and OB examinations, I stopped with all the worry and finally focused on a positive outcome.
On October 16th, my OB called with the news that my alpha fetoprotein was highly elevated and he wanted to repeat blood work and an ultrasound. My crowded mind failed to comprehend details of the rest of our conversation, but the words “neural tube defect” and “spinal bifida” and “anencephaly” and “elective pregnancy termination” echoed in my head like the reverberations of a gong.
I ended the call. Hung up the phone. And stood in the tiny kitchen of our apartment while my face burned like fire.
I didn’t know much. Only that neural tube defects were typically prevented by the folic acid in prenatal vitamins, and I’d never feared a defect of this sort since I’d been taking those long before George and I ever got married. I gathered from context clues that neural meant brain and tube meant spine, and both were parts of the anatomy that our baby needed.
My instinct sent me running to my laptop, as Dr. Google could help shed some light on this unknown area. I stopped short, realizing that while I may be able to handle the truth in most scenarios, stumbling across images of misshapen newborn babies might not be the best for an emotional pregnant woman to absorb.
I thought of my Sophomore year in college when I wrote a public interest piece on a Creative Care Living facility for the school magazine. The facility housed approximately 10 disabled adults who were unable to live independently. Some of the residents were high functioning, while others were not, and I searched to the far depths of my mind trying to remember the specific afflictions that ailed each person I met. Most clearly, I was able to see a man who lived reclined in a special wheelchair. He ate through feeding tubes, eliminated through a colostomy bag, and showed no sign of life in his eyes. He drooled and let out sporadic cries and sucked incessantly on the back of his pale, bony hand.
What did that to him?
Why couldn’t I remember?
Was his condition related to a neural tube defect determined within the first few weeks of his conception?
My mind went to places too dark to explain.
I called George and told him the news through broken speech.
I rushed back to my OB’s office, holding on to every ounce of hope the elevated result was caused by a lab mistake and that giving more blood would rectify my fears. My OB gave me paperwork to pass along to the ultrasound tech the next day. After I left his office, I opened the envelope to decipher the results. A table discussing risk factors before and after the blood work detailed my chances of giving birth to a baby with Downs Syndrome, Trisomy 18, and ONTDs/VWD. The results read:
Downs Syndrome: Results within range.
Trisomy 18: Results within range.
Total ONTDS/VWD (Open Spina Bifida, Anencephaly, Ventral Wall Defect): **SIGNIFICANT ELEVATION**
My hands shook and the paper prismed as I fought away more tears.
Our baby’s risk for Down Syndrome is 1 in 46,430. Our baby’s risk for Trisomy 18 is 1 in 163,606. And our baby’s risk for Open Spina Bifida, Anencephaly, and/or a Ventral Wall Defect is 1 in less than 5.
LESS. THAN. FIVE.
I googled those conditions and after one image of an infant with a hole in his back appeared, I closed my computer and decided that the fears in my head might actually be softer than the reality the internet may offer.
My night was filled with hypothetical scenarios of what the future might bring. Would we be urged to terminate? Even after experiencing fertility woes that seemed to never end, I strongly believe in a woman’s right to choose. But for me, for now, there is no choice. This is our baby. He is our son. George and I have fought hard for him. I’ve watched his legs kick and arms wave on ultrasounds. I’ve listened to the sound of his heartbeat as though it is the work of Mozart. I’ve felt his gentle thumps from inside, reminding me that he’s alive and well and ornery. Electing to end my pregnancy is unthinkable.
But then…
My mind drifts to thoughts of him forever living in the confines of a chair. Forever living without tasting food. Forever living without running aimlessly through the park. Forever living in the dark. Forever living without the ability to tell me that he’s in pain, or that he’s unhappy, or that he’s scared, or tired, or cold. As his mother, it is my job to protect him. It is my job to keep him safe and warm and comfortable. It is my job to speak when he cannot. It is my job to react when he is unable. And the possibility of having limited or no ability to communicate with my son is devastating.
The next day, I had an ultrasound to review the baby’s spine and brain stem. The tech spent nearly an hour examining every section of his spine and brain. She was quiet and calculated. As my appointment neared the end, she softly spoke, “I think he’s perfect.”
Exhale.
“Yeah?” I sobbed.
“I can’t see a single thing wrong with him. I’m going to have our doctor review the scan, but his spine looks beautiful.”
She alerted the perinatoligist who greeted me with the same results.
“There is a small part of his back that hasn’t ossified yet, but that’s normal for a 16 week fetus. We can check you again at 20 weeks, but I’d say he’s perfect.”
I thanked them a thousand times and left feeling as though I’d been given winning lotto numbers.
Faulty lab results. That had to be it!
I spent Wednesday night and Thursday breathing a little easier, waiting for the results of my second set of blood work to reveal a mistake with my first results.
But when my OB called the next morning, he confirmed the blood work continued to show high levels of alpha fetoprotein. He ordered genetic counseling and an amniocentesis for early the next week. He explained the amnio would help pinpoint the alpha fetoprotein in the placenta to determine if this elevation is being caused by the baby or by me. He reviewed the ultrasound results and said he agreed with the perinatologist and the tech and thought our baby’s brain and spine looked fantastic. He explained that if the amnio showed a lower number, we’d deduce the problem is being caused by my body rather than the body of the baby. He also explained the odds of the results meaning absolutely nothing, and told me that biomarkers like this can swoop in, scare the crap out of us, and not result in a single problem.
Elevated alpha fetoprotein can be a tumor marker in adults- most commonly related to liver disease or cancers, ovarian tumors, or types of hepatitis. Being a patient of infertility, I’ve seen my ovaries a thousand times. Regardless, I’ve researched the common possibilities of an elevated AFP upside down and backwards and have zero of the symptoms described. Yes, the AFP could be coming from my pituitary tumor, although it is presumed unlikely.
Our appointment with the genetics counselor came early the following week. As we are becoming accustomed, we met with one of the best in New York. She took an hour explaining the risks and rewards of opting for an amniocentesis and how the procedure often comes with more anxiety for women with a history of miscarriage. She discussed possible reactions and treatments if the levels were, in fact, being produced by our son. She was kind, empathetic, professional, and extremely intelligent. I left her office feeling we had another advocate rooting for our success.
Despite her assurances that an amnio was not required and that many parents who opt for the “wait and see” method don’t regret their decision, we decided we are more “need to know” than “wait and see” people. (Of course we are.) After the perfect assessments of our son in an extremely detailed ultrasound, I was able to rest easier knowing this problem was most likely unrelated to him.
That night, I ate dinner like a champ, watched TV like a champ, and slept a full eight hours like a champ. It wasn’t until the next day that I realized George wasn’t feeling the same relief of stress I was. It wasn’t until the next day that I realized that good results for his son, meant possible negative results for his wife. It wasn’t until the next day that I stopped basking in my own confidence to hug him and assure him that no matter, I am stronger and more resilient than our unborn child, and I was going to be absolutely fine.
I felt like such a dick. All the while, I’d been cheering for two of the three possible results. One, the problem was not a problem- merely a flawed testing system that often results in false positives. Or two, the problem was a treatable and curable, and existed within me. For George, rooting for the second scenario was as unthinkable and the third.
The day of our amnio arrived. With few nerves, we entered the procedure room ready to do whatever we needed to find answers about what may or may not be causing our results. An ultrasound determined the location of the baby, and allowed the physicians to find the best entry point for the needle, as to avoid the baby at all costs. With George by my side, we watched a large television monitor of our son cuddled on the left side, leaving a nice pocket of fluid on the right for the doctor to collect. Betadine was applied to my abdomen, from ribs to pubic bone, and the doctor, monitoring the baby’s subtle movements, inserted a hollow needle into my stomach. As she pierced through my skin, Henry stirred and quickly moved to the right side of my uterus. She paused, needle in my skin, but not yet in my uterus, and used two fingers on her other hand to prod my belly in hopes of getting him to move back to the left.
“This’ll hurt you, buddy.”
I liked that she talked to him.
With little luck, he navigated his way toward the center of my uterus, giving her a tinier space to gather fluid. She decided to continue, and I watched the needle pierce through my uterus on the ultrasound screen.
Before the fluid could be extracted, our stubborn child, wiggled his way toward the needle. Curious maybe? Or totally defiant? Both? We joked about his non-compliance, but rather than risk it, the doctor decided to remove the needle and try to gather fluid on the now vacant side of my uterus.
I watched the needle pierce into my uterus on the other side, and as if magnetized, Henry swam toward it again (an attraction to shiny things? Oh lord.).
“Does this child have a name?” the doctor inquired.
“He is Henry.” I replied.
Laughing, she spoke to him again. “Henry, you are kind of a jerk.”
George and I smiled and looked at one another, curious if his lack of cooperation meant a lifetime of parental headaches. Insights into the personality of our boy, good or bad, make me smile. George and I were good kids. Maybe our son was meant to be more like our mischievous parents? We welcome it, no matter.
In the end, Henry waived his white flag, and two vials of amniotic fluid were extracted from my uterus. Both the ultrasound tech and the doctor commented on the dark, cloudy color of their collection and asked about my bleeding from earlier in my pregnancy. The doctor explained that sometimes the bleeding from the mother mixes in the amniotic fluid of the baby, resulting in an elevated AFP. In which case, not a single thing would be wrong with either Henry or me.
Yes, that has to be it.
Following the amnio, I was instructed to take a cab home and rest for 24 hours. I was to report a fever, major cramping, bleeding, or a loss of amniotic fluid- all highly unlikely, but possible reactions to the procedure. I spent the next four days overanalyzing my underwear and stressing over fluid loss. I called my OB to discuss my neurotic behavior and he brought me in for an ultrasound just to prove all was well and good. It was. And my baby put on a show the way he usually does. Maybe he’s not defiant at all? Maybe he’s just bored and wants attention??? I don’t care.
The results of our amnio were supposed to be back Wednesday, although Hurricane Sandy destroyed the power at NYU Langone Medical Center, leaving my results impossible to obtain until the medical offices are up and running again. So we wait. A little longer.
But it doesn’t matter to me anymore. The scary no longer seems scary. I have feelings deep within my gut telling me everything will be just fine. I have the track record to know that our baby is a survivor, just like his parents, and our parents, and their parents. And these results are going to confirm the relief we already feel. And our baby is going to be awesome.
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11/05/12: Despite the damaged communication systems that plagued Midtown and Lower Manhattan (thanks Hurricane Sandy), I heard from the geneticist today! Part of my amnio results are in, showing a lower AFP coming from the amniotic fluid than was discovered in my blood. The AFP in the fluid showed a “borderline elevation” which most likely means all is fine and dandy with Henry!!! This could indicate a tumor marker in my body, but the most likely scenario comes from the false reading caused by the bleeding earlier in my pregnancy. Having blood in the amniotic fluid makes the tests wonky. So until we know otherwise, I’m going with that. :-) I meet with my OB tomorrow to discuss results at length. I’m breathing a big ‘ol sigh of relief, either way.
