Stephanie

Diagnoses
– Partial hydatidiform molar pregnancy including nonviable fetus with multiple chromosomal abnormalities (spina bifida, triploidy, and likely heart defects)
– Missed abortion/intrauterine fetal demise sometime during 16th week, discovered at 17 weeks 0 days
– Preeclampsia complicated by HELLP syndrome

My name is Stephanie, and I am 27 years old. I have been with my husband since I was 17. We married when we were 24 and had our first child, a healthy baby boy, in May 2016. We were ecstatic that we were going to be giving our 1.5-year-old son a sibling. I kept it quiet, only telling close family and friends until close to 12 weeks. I figured out I was due October 26, 2018. I also had to inform my boss and the charge nurses at work (who assigns staff to patients), because it is a hospital and we can be faced with disease precautions that can affect pregnant women and their babies if exposed. By about 12 weeks, several of my coworkers knew. My whole first trimester I was waiting for morning sickness to come and it never did, although I was extremely fatigued all the time. This didn’t help being a nursing assistant on a hospital unit where you are on your feet your entire shift, but I pushed through.

At 12-week ultrasound (11.5 weeks) the heartbeat was found, baby was moving, and we only had a small concern about the nuchal translucency neck measurement. Doctors thought they possibly didn’t get the best imaging of it and had me get a repeat level-2 ultrasound, which occurred at 13.5 weeks along. The doctor reviewed it, and the new measurement appeared to be thicker than the last. They had my ultrasound sent to the perinatologist’s office (specialists in high-risk pregnancies), and I was scheduled to see them after a few days. I was now 14 weeks along and experiencing still little to no nausea but had started experiencing fluid retention and more weight gain.

It was at that appointment they repeated the ultrasound and told me they found my placenta was cystic, the placenta appeared to be thicker than normal, there was a questionable blurry black spot in the placenta, and the baby had spina bifida. After hearing the words spina bifida, everything else they said was a blur. My husband was holding our sleeping, healthy, beautiful, almost 2-year-old in his arms when they told us this. It was the most devastating news I’d ever heard. I asked the doctor to have a colleague of hers review the ultrasounds as well to see if he was seeing what she saw, and we met with her colleague 2 days later. It was then that this doctor informed me it wasn’t just a cystic placenta, thick placenta, questionable black spot, and spina bifida. It was likely “triploidy” and a ” partial molar pregnancy” together, and the fetus was not viable. I was told I would likely miscarry by 20 weeks at the most and that I had little to no risk of carrying the baby up until 20 weeks. After 20 weeks my health would start to be at risk (high blood pressure, severe fluid retention), even to the point of being life-threatening, carrying a fetus and placenta like this. They suggested and gave information about ending the pregnancy, but I wanted a clear and definitive answer before making that decision.

That same day, I had a blood test done that was sent to a genetic testing company but would take several days to weeks to come back with my percentages in risk factors for triploidy. After an awful and dreadful week and a half of waiting, I got a result back that it was an 89% chance that the baby had triploidy. Still doing our best to have hope, we scheduled an amniocentesis, which would give us a definitive yes or no answer before making the decision to terminate our baby. I wasn’t able to schedule that until 17 weeks, 6 days. By my 16th week of pregnancy I still had not miscarried and went in for my “16-week checkup” on Wednesday. The obstetrician was unable to hear a heartbeat, but after looking on the mini portable ultrasound found the visible heartbeat. In all honesty, I was hoping she wouldn’t find the heartbeat. I was emotionally and physically so miserable that I wished it was over with. I felt like I had an alien inside of me, even though there was technically a baby in there. I initially felt so bad just for the baby, and after weeks of agonizing waiting and worse information each doctor visit, I just wanted this all to be over with. I also informed my obstetrician that during this 16th week I had started getting pretty bad nausea (could still eat and drink but not much) and headaches on and off. My blood pressure was still in a relatively normal range (I believe it was 130/90 and I usually run about 116/80). I noticed my weight had increased by more than 10 pounds in 2–3 weeks as well. I continued on with my week and was doing my best to be positive because my son was turning 2 on Saturday.

Saturday, my son’s 2nd birthday, came around, and I was feeling okay all morning. I had been running a few errands with my mom and later that afternoon started getting a headache and decided to lay down after getting home. After a while I got up and my headache only got worse. My mother (who is a registered nurse) came over to manually check my blood pressure, and she got 180/120. She told me to go to the emergency department. My husband came with, and she stayed home with my son.

After getting to the emergency department (which also happens to be the hospital I work at), I developed a migraine, and my blood pressure was 190/118. I told them everything that was going on with my pregnancy, and I was bawling. I was put in a room immediately, given pain meds and blood pressure medication to bring my blood pressure down. The migraine got so bad I couldn’t keep my eyes open and was even having some cognitive impairment/decline. I was quickly moved into a stabilization room in the emergency department. Everything from there on was kind of a blur, but I remembered most of it. I was given two intravenous lines and had labs drawn. I remember the ER doctor yelling at everyone that we had to get this blood pressure down immediately, because it was now 199/122. He told me that they suspected I had developed HELLP syndrome (Hemolysis, Elevated Liver enzymes, Low Platelets) from preeclampsia and that the only cure for that was to deliver the baby regardless if had a heartbeat or not. I was basically told I was going to die if this baby didn’t come out of me. They quickly got an ultrasound machine to see if they could see a heartbeat (they weren’t able to hear it with the doppler), and they weren’t able to.

Once they stabilized my vital signs, they admitted me to the labor and delivery unit, where I was seen by the labor doctor immediately and was told I was going to be induced. I was given a form to sign for them to perform an abortion if my baby still had a heartbeat. They also got an ultrasound up to see if they could find a heartbeat and declared there was no heartbeat and that I had had a missed miscarriage sometime during the week. They told me that instead of inducing (I was 17 weeks to the date), the baby was small enough (measuring 13.5 weeks) to have an emergency D&C done. On top of that, I was told I had a high risk of hemorrhaging and could have a large amount of blood loss during the D&C.

I was whisked away to the emergency D&C. On my way down, all I could do was pray to the Lord that my husband and child would be okay without me if I didn’t make it and that He would bring me and my family peace before I went under. After the procedure I was informed I had had significant blood loss (I believe they said a little over 1 L) but didn’t need a blood transfusion at this point. I was put on the magnesium protocol (magnesium helps prevent seizures in relation to severe preeclampsia), which lasts 24 hours, and my labs were being checked every few hours to watch my liver function and my red blood cells and platelets normalize. I was also getting my urine collected for 24 hours to confirm “proteinuria,” which occurs in preeclampsia. I was very weak from everything, and my knees would buckle when I would get up. I did my 24 hours on the protocols, and then they took me off and watched my lab values for 24 hours. Twelve hours after being on the magnesium protocol, I started to physically feel liver pain (which I had initially mistaken for bad gas) and had to go back on the magnesium protocol. My blood pressure was going up, and my labs showed a decline in my liver function after it had shown improvement earlier in the day. That meant another 24 hours on the magnesium protocol and another 24 hours of monitoring my liver function, red blood cells, and platelet counts afterward. I eventually stabilized and was released the morning of day 5 (Thursday morning) of being there. I was sent home on blood pressure medication to help stabilize it for a few weeks.

Naturally, working in the healthcare field, I checked my blood pressure frequently because I was constantly worried about it getting too high/or even low. I was occasionally getting a tightness in my chest and slightly short of breath and made a trip to urgent care Saturday morning. I was told it was due to anxiety and was prescribed something to help me sleep better and told not check my blood pressure more than twice a day (can you blame me?). I never initially expected I would lose my second baby, let alone on my son’s birthday.

I was only out of work for a week after being discharged from the hospital. Upon returning to work, some of the people who found out consoled me. I walked by coworkers who had no idea I had even been pregnant talking about their pregnancies and new healthy babies. It made me really mad hearing about happy pregnancies and healthy newborns during those first few weeks, and I have since moved on to feeling more jealousy. I’m sure one day I will feel happy again for others experiencing healthy pregnancies, but you can’t help but think that way sometimes after being through such a traumatic loss.

First and foremost I am thankful to just be here with my family after being faced with the potentially life threatening situation. I am thankful I can look into my son’s eyes and hear him laugh. I am so thankful to my wonderful husband who was a positive blessing throughout the whole situation. I am thankful to have a mom who is an nurse to guide me in that emergent situation as I probably would’ve waited longer to go in if she hadn’t come to check my blood pressure. I am thankful to have had such good care my whole pregnancy and hospital stay.

I am now about 2 months out of this whole situation and getting my weekly lab draws. My last value was 18, down from around initially 400,000, and I am hopeful it will continue to decline and that I will get my 0. I was given the estimate of 6–9 months of achieving 0 and staying at 0 for 3 monthly lab draws. I have hope that my husband and I will eventually be able to have another healthy baby in the near future.  I hope my story sheds light on these two rare conditions: partial molar pregnancies and the complication of preeclampsia, HELLP syndrome.

I am so glad to have found this website community and hope my story and experience helps someone going through a similar situation. I am devastated to have never gotten the chance to meet or hold our second baby. We did find out through a pathology report that it was a boy, and we named him Taylor. I find comfort in knowing he is in Heaven with his grandma and other relatives and that I will meet him someday.

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