My child that was given to me by the stars: Losing my second pregnancy to Trisomy 13
Trigger warning: Infertility, multiple pregnancy loss, abortion, chronic illness, depression, LONG post.
In January, I coped with the loss of a friend. I thought to myself: "what a fine way to start off 2021, the year that was supposed to be a year of hope."
While this is more of a lifestyle blog, I'm taking a break from that for a sec to share this personal moment with you. I feel as though if I don't write this, I'll explode.
I am the type of person that views every incident and event as a lesson. I find meaning in suffering (perhaps that's the last bit of Catholicism in me) and I try to come out of every trauma stronger than before, albeit with a few battle scars.
Those that know me personally know that I am pretty candid about my lifelong battle with Poly Cystic Ovarian Syndrome. I was diagnosed at 14 with early onset of the condition, right before puberty (yep I was a little late to that game... PCOS was the culprit.) I am not your typical patient, but once you get past the fact that I don't look like PCOS (I'm lean to the point where I've been underweight at times, not something that usually occurs with this condition) I've got it all. High testosterone, numerous cysts on my ovaries, and an irregular period (if I get one at all.) When I do get that wonderful cycle, it can last anywhere between a few days to 60. And it's painful.
Flash forward 12 years and I found myself pregnant. But that didn't last for long. A few weeks after that Big Fat Positive test, I had a miscarriage.
My doctors decided that I should try to get pregnant again, and they'd treat my PCOS by treating the symptoms: which resulted on me being put on metformin (a medication that is used to treat type 2 diabetes) and spironolactone (a medication that can be used to treat high blood pressure.) I wasn't diabetic, but I had quickly gained some weight and my blood pressure had actually skyrocketed. Spoiler alert: The new medications didn't work, and after a year of depression, continued weight gain, and infertility, I saw a new doctor, who put me back on the pill.
That year of darkness sparked a recommitment to myself and my body. I wanted children one day, and I wanted to be healthy. So I worked hard and lost the weight. My PCOS symptoms got easier to deal with since I was back on the pill. I was moving forward with my life, and making moves for my future. I got a promotion at work, and worked toward my master's degree. My husband and I got engaged, and we bought a house.
Achievements unlocked: 1 masters degree, 1 COVID elopement
By September, 2020, I was off the pill again, and my doc had done a complete fertility work up on my blood. And things were looking really good. My husband and I were given the go ahead to get busy a few weeks before we eloped at a lavender farm near our house.
By November of 2020, I was married, a Master of Public Administration, and off the pill for two months.
Here's where life gets a little murky.
If you've been reading my posts, you may have picked up on the fact that I'm a journalist. And well, it gets deeper. I'm actually an editor at a newspaper, and part of my job includes supporting an entire region of papers. So if you think back to November of 2020, you may get a sense of what my stress levels were like back then.
Up until that point, I had been meditating almost every day, and quite committed to my spiritual path. I felt safe, loved and supported. Of course, working around the clock to cover an election in a very strategic part of the country (Both candidates just wouldn't stop coming to Pennsylvania) was starting to get to me.
The week of the election knocked the wind out of me. I got married on November 7, a few hours after a winner had been declared. This is not a politics blog, or at least politics are not relevant to this post, so I won't bore you with any of that.
Fast forward to April, and I'm feeling quite strange.
I had a dream, that "my son" from my first miscarriage met with me in a mysterious place (I was always convinced that that early pregnancy loss had been a baby boy.)
My maternal grandfather, who has been deceased since 2005, sat on the curb of a sidewalk. Around us, the sky pulsed deep blue, and we were surrounded by what I think were stars or images of nebulas. Looking back, nebulas are typically considered "star nurseries." How fitting.
"Who the hell is that?" He said, gesturing to the super tall, olive-skinned, boy with angular features, green eyes and a mop of long, curly golden hair as the boy embraced me. The teenaged boy sighed and said "Hi mom." And he held me for a long moment. I gripped him tightly.
I turned to my grandfather and said "What do you mean 'who the hell is this?' That's my son!"
I turned back to the boy and embraced him again. I woke up at that point, already crying.
I felt grateful for that moment during which I could reunite with him in my dreams. I think I had even whispered "thank you" while I laid in bed. I had stopped dreaming of him a year or two before. I dream regularly about my deceased relatives and my "children." Dreams of my proverbial kids usually consist of either two boys and a girl, or just a boy and a girl.
It was around then that I started feeling really off. I felt as if I was dealing with a bladder infection, or a kidney stone (I've had both) but couldn't quite figure out my symptoms. A friend pushed me to go to my gynecologist, and I kept putting it off. I thought that after six months of being off the pill with little consequence from PCOS, my condition was being aggravated. Nothing about those few months off the pill felt normal, physically.
After a virtual meeting had to end abruptly due to a searing pain in my side, I started to grapple with the possibility that perhaps I did need to go back on medication for PCOS. After nearly fainting a week later in a shopping mall, I decided it was time to request an appointment with my doctor.
It was like my PCOS symptoms were returning with a vengeance.
My regular OBGYN was not available that week, but he had a colleague in the office that treated similar conditions. I didn't care who I saw, I just knew that things didn't seem right, and I was in a world of pain.
The day of my appointment, I rattled off 15 years of medical history to the doctor, and showed him my cycle tracking app on my phone. He told me "You look like you're managing your PCOS really well, but I think you need to take a break from trying to get pregnant. Let's get you back on track with the pill for the next three months, then you can try again."
I started crying. I knew he would tell me this, but I was just so exhausted by my own body.
My PCOS wasn't just managed well, it was micro managed. I did yoga whenever I could, I ate a strict diet, and I was in therapy to manage my stress. I took vitamins that made me sick and I took a pregnancy test twice a week after my period went away in March (by now, it was a few days before Mother's Day.)
As a precaution, he sent me for a blood human chorionic gonadotropin (or HCG) test, a protocol before starting birth control.
A few hours later, I got the email that the test came back positive. I was pregnant, without a doubt.
The office was closed, so I called my mother-in-law, who is a Nurse Practitioner. She looked over the numbers and confirmed them. "You're really pregnant!" She said. I gathered my wits about me and told my husband. He asked if it was a fluke. He knew every test I was taking came up negative, and he remembered our chemical pregnancy from a few years prior.
Eventually, I got a call from my dr.'s office: "Don't start that pill! You're VERY pregnant."
We couldn't believe it.
A few days later, we met in the park with family for some Mother's Day bagels. We weren't planning on telling anyone for 6 weeks. Then my brother and his fiancée announced they were pregnant with Baby No. 2. My husband and I just looked at each other, eyes wide.
Immediately I started to feel sick, and even sad, and decided it was time to go home. I'm not sure why I felt that way, but it was overwhelming. I was scared, and I felt alone.
My parents came over later that day, and we decided to just tell them. My father almost fainted. My mom screamed at me. Later that week we told my husband's father.
A few weeks later we found out my husband's sister-in-law was pregnant, too. "Incredible" we all thought. What are the odds?
Due to my previous early pregnancy loss, my doctor sent me for regular blood work to monitor rising levels of HCG. They tested me every few days. Soon, they were able to establish that I was only about 4 weeks pregnant. Things were looking good with my levels, so they made an appointment to finally see me at 11 weeks.
And it was all uphill from here.
At 6 weeks, I was already feeling incredibly sick. My morning sickness was in full swing, and I was happy! (Even though I threw up a few times a day, was super dizzy, and was nauseous for maybe 15-20 hours each day.)
In addition to the hurling, everything hurt, and I was having regular pains that I thought were "Braxton Hicks" contractions, which happen in the second trimester to prep your body for the eventual labor. When it happens early, it could indicate a miscarriage.
By now, I was having regular nightmares about losing the baby, or a baby in pain. I felt like I was going crazy, and everyone was telling me to calm down. I upped my talk therapy to once a week, because my anxiety was so high. Normal for someone who has lost a pregnancy before.
I was also having a lot of pain in my side and in my hip. My pee didn't look right for a few days. I made my husband take me to the ER, fearing ectopic pregnancy or worse.
We found out that Baby was in the right place, but I had a Urinary Tract Infection. The contractions I was feeling may have actually been bladder spasms, doctors told me. I had what felt like period cramps as well, and the pros told me that was normal. Baby's heart had actually started beating. Happy to receive pictures from an emergency early ultrasound, we headed home.
I spent my 31st birthday, a few days later, vomiting in the sink every few hours and eating white rice for almost every meal.
My mother took me to my first OB appointment with a nurse midwife, because by this point I was too dizzy and sick to drive. I had already gained 10 pounds, and had no predictable morning sickness. Other than that, I was eating somewhat solid foods by then and taking my prenatal vitamins as directed and upping my water intake. I was avoiding exercise and things like caffeine because I was so worried that I was too sick.
After struggling to find baby's heartbeat on the little doppler device, we heard it. Baby was shy, and swam away from the nurse, but when she found it, it was strong. I was officially deemed "a normal pregnancy."
I couldn't believe it.
Somehow I couldn't shake the feeling that she was wrong.
I had made it to three months. My husband was meeting me after work for our nuchal translucency ultrasound— our first peak at the baby since I had been in the ER. This ultrasound checks for fetal abnormalities and can be used to predict viability.
I woke up feeling incredibly anxious. Everyone and their mother had been texting me (or it felt like it— we hadn't told too many people yet) reminding me to promptly send them photos and updates after the ultrasound.
My husband had been anxious too, I think. He was short with me that afternoon, which is rare. He had never seen an ultrasound before, and we weren't going to my OB. We were going to the health network's Maternal Fetal Medicine office.
The screen lit up, and there it was.
Our baby, looking huge. Long arms, short legs, like mine. Agile fingers like dad. Maybe they would be a musician like him? Baby was calm, didn't move much, but occasionally treated us to a wave or kick. The tech was silent throughout.
She asked me to cough, she needed a closer look.
Supposedly coughing could help flip baby. I coughed a few times, but it didn't work. She needed to do an internal. "No problem!" I said, easily adjusting. I had been getting them a few times a year for the last decade (typical answer from a PCOS patient.)
In she went, and the silence prevailed. My husband and I were oblivious.
Soon she let us know we could sit tight, she needed the Nurse Practitioner to take a look. She handed us a roll of fuzzy photos, My husband and I excitedly discussed what we just saw. "Did that look like a penis to you?" "This baby is lazy!" "Look at those 'fingies'."
A nurse came and escorted us to the NP's office. My stomach dropped. I knew that office meant bad news. We both got quiet.
The NP sat us down, and had tears in her eyes. She explained to us that our baby had a cystic hygroma, a rare complication but could indicate something like Down's Syndrome.
"Not a problem." I said, I knew that might run in my husband's family. She nodded, and it looked like she was holding back.
She went on to explain a few statistics, and told us things did not look like there would be a good viability outcome. My mind did gymnastics "Babies are born with Down's all the time, why is she telling me that things 'don't look good?'" She handed us information on a CVS test, a placental biopsy that they would need to do by next week to get more information. She told me not to google anything.
Good luck telling a journalist with degrees in legal writing/research and social science not to google.
She also let us know: "There was a penis on there. It's a boy."
She escorted us out and handed us an envelope for our photos. She apologized and said that we were really sweet and didn't deserve this. I was confused. The entire staff looked at us like we would explode at any minute. "What's so bad about Down's?" I wondered.
On the drive home I got an email about my results. It wasn't just cystic hygroma. It was a developmental slowdown, and holoprosencephaly. A condition that results in just about 100% fatal outcome for baby, with varying severity.
I broke down in the car and again when we got home. My husband didn't understand why I was reacting that way.
Somehow in the midst of everything, I told his mother and my mother, but forgot to tell him.
I never take days off. Rarely do I ever take more than two in a row.
The night of our nuchal translucency ultrasound, I texted my boss letting him know I needed to immediately take a week off from work. I needed diagnostic testing that would require three days off anyway, and I needed a few more for my mental health.
By Monday, my belly had flattened out. I had been showing early, but all of a sudden, it was like I wasn't pregnant anymore. I was still nauseous, and just as crampy. For some reason though, I just felt like Baby was gone (Baby wasn't.)
Midweek, we made the trek to Allentown, the only city with an office in our region that could do the CVS. After nearly two hours of battling my bladder and trying to figure out the best way of inserting the needle into my placenta, the team of doctors and nurses finally retrieved my biopsy sample. This was some of the weirdest pain I'd ever felt. Like a pap smear with sandpaper that went a little too far up into your body.
My husband took my Kung Fu grip like a champ, and watched the ultrasound monitors so I didn't have to.
When we got home, we got an email about the Ultrasound. More abnormalities detected. Two vessel cord, potential fluid or benign tumors on the brain, lack of fetal development, abnormally-developed heart, in addition to the cystic hygroma and holoprosencephaly.
I cried again when someone texted me that they were praying things would turn around for us. I asked my husband "Do they know how serious the condition is?"
Apparently, my husband didn't.
And then I retraced my steps, and realized that him and I had never talked about the prognosis we had received the week before. I rattled off statistics and facts I had gleaned from university medical papers and abstracts, and he was silent.
He thought it was "just" cystic hygroma.
I told him that I was already mourning the loss of our son, even though, technically, he was still alive. That "it was just a matter of time before I miscarried or needed a medically-necessary termination."
I couldn't risk carrying him to term, I had seen blogs from mothers that chose not to terminate and they had regretted extending the pregnancy. Babies with these conditions suffer greatly and die within days or weeks after birth.
It felt like I was torturing the life inside me.
The next day was easier. My husband had to go back to work, and my mother came over and cooked for me all day. I had my fill of homemade tomato sauce, Spanish rice and other Good Stuff. She talked with me all day while she worked remotely in my kitchen. I was so grateful.
When my husband came home, we reheated the dinner my mom made us and talked through what was happening. We both agreed that we couldn't prolong the pregnancy, but we did agree that we wanted to try again.
A geneticist had recommended IVF to us the day before, as you could test embryos for genetic issues that could potentially contribute to what happened to us. I started researching clinics in my area (there were none) but did find one the next state over that seemed to put an emphasis on genetic testing. I read a few blogs from a woman with a similar story. After 4 pregnancies, she was able to successfully birth a baby boy thanks to genetic testing of an embryo and IVF (read her blog here).
I let myself hope, and I slept a bit easier that night.
At some point during the week, we received a preliminary result from our CVS— our Baby had Trisomy 13, or Patau's Syndrome, what the numerous doctors that had reviewed our initial ultrasound had suspected. We also learned that Baby was a girl, not a boy. Apparently malformed genitalia is also a symptom of Patau's.
That Friday was strange. I had been OK when I woke up, but soon started feeling dizzy and sweaty. The veins in my neck were throbbing and I had heart palpitations. I had cramping.
My mom picked me up and we met my mother-in-law at the Maternal Fetal Medicine office. Baby was OK, my vitals were normal. Both grandmothers got to see Baby girl.
Later that afternoon, the episode happened again, and my mother-in-law checked my vitals. My heartbeat was irregular. I did yogic breathing to calm myself down so that things would go back to normal. They did, but I was really not feeling so hot.
My memory gets fuzzy here. I know I spent this week preparing to get the call from the surgical center about my termination procedure.
All I did was work, and work hard. Work too much. Anything to distract me and keep me at my desk. Keep me near the phone.
The dizzy feelings happened often, and I was still vomiting and having morning sickness. I tried to clean up my diet the best I could without eating anything too exotic for my weak stomach. But pasta was really the name of the game.
That phone call finally came, I was to have the procedure the next Tuesday, during my 15th week.
I decided that we would name the baby Xiomara that weekend. It's a Spanish name that means "Ready for Battle" and somehow originated in Germany. I'm half-Latina and my husband is German Jewish. The name fit.
Some time later
Yes, Xiomara is gone. Every morning I wake up and put my hand on my empty belly to remind myself that this actually happened. That this nightmare was real.
Post surgical pathology found that she was "nearing fetal demise" and I had an "impaired placenta" in addition to Trisomy 13. My body was gearing up to miscarry naturally. I would have had to have the same procedure I had that second day of my 15th week eventually, no matter what.
Since that week, we've started planning the rest of our lives.
I break down most days, at some point. I'm not sure which day is what when I wake up.
I've had a few big breakdowns, and I've contemplated why the hell I was allowed to live, and Xiomara wasn't. Did we make the right choice? Should I just have let it happen naturally? It could have happened at any point, but I felt that if we had gone as far as 20-something weeks, there was a chance she would feel the pain of her condition in utero. Remember, she didn't just have Trisomy 13.
So now what?
Since then, I've been getting tested to see where I am at with my PCOS, and we are about to do genetic testing to make sure we don't carry genes that put us at risk for another situation like this. My doctors are confident we can get pregnant again naturally, without IVF, but want to make sure we are OK genetically, physically, and of course, mentally, before we try this for a third time.
Sometimes it feels like not enough time has passed, and other days it feels like Xiomara herself is pushing us to try and get pregnant again. We are terrified to even try, considering I'm so fertile right now. We are terrified to do anything together until we get a clearer picture of my health and our genetic carrier status. The sick part is, I'd be willing to undergo this whole debacle again if it could give us more time with her. I'd do anything to be able to feel as sick and miserable as I did a few months ago, blissfully unaware that something horrible was happening to our baby.
But I don't regret my decision. Not one bit.
I have to pick myself up and move on. My husband and I are working on getting as healthy as we can, although we really weren't that bad before, so that we can start our family. Whatever that may look like.
I see Xiomara everywhere. In the baby rabbits that have moved into our backyard, in the black-eyed Susans that just started popping up in my garden, and in the stars in the night sky.
Like I said, this is a lifestyle blog, that is about alternative spirituality, but I had to write this. And I'll likely write about this again. If you'll stay with me for the journey, I'd be indebted to you. It's cathartic for me to write.
I'm hoping to share a more candid version of what comes next, because frankly, no one is writing about this. No one in my spiritual persuasion anyway, that is. I'm a Wiccan woman of color, and while I appreciate and occasionally read blogs from more mainstream writers, I found that I had no one to relate to while I was gearing up to make the most painful, and necessary, decision of my life.
I have to write about it, or I'll explode. Please bare with me, and thank you for sticking around.