How HELLP Syndrome Landed Us a Long-Term NICU Stay

Local mama goes from perfect pregnancy to nightmare delivery and a NICU stay

Hellp syndrome, preeclempsia and premature birth

Editor's Note: In honor of Prematurity Awareness Month, we are honored to share Stephanie's birth story from a sudden diagnosis of HELLP Syndrome (Hemolysis, Elevated Liver enzymes, and Low Platelet count) to a premature birth at 29 weeks. If you would like to share your own story to help spread awareness on a parenting issue or topic please visit the link here to find out how.

I had the perfect pregnancy. Textbook. People were jealous. No nausea, or swelling. No food aversions, not even a hormonal attitude change. It was such a breeze.

Until it wasn’t.

Around 16 weeks I started feeling round ligament pain, which is totally normal, albeit annoying. Everything was stretching, and so with too-quick of a turn, roll or simply standing up from a sitting position I had pain. I asked my OB several times about this and was told it was all normal.

August 30, 2018
I couldn’t sleep because of the pain. I went to the OB where the on-call doc tells me everything is normal but offers up an ultrasound “for peace of mind” two days later. This ultrasound is forwarded to the radiologist and OB for review. Baby is sizing about three weeks too small and they don’t know why.

August 31, 2018
The next morning, a Friday, I'm at work talking about how easy my pregnancy has been with a friend. It was at 9:15am, the time everything changed. My OB calls and tells me she made a 10:45 appointment with a Maternal Fetal Medicine (MFM) specialist in Poughkeepsie, over an hour from my job. I need to get there immediately. I call my husband and we both rush up to MFM where we wait.

We meet with an incredible neonatologist, Dr. Kim. He explains the baby has a Small Gestational Age (SGA) with Intrauterine Growth Restriction (IUGR) due to Placental Insufficiency. Dr. Kim encourages me to start packing in carbs and protein, preferably lean animal protein rather than my typical vegetarian diet.

In addition to my new diet, Dr. Kim tells me I need to change medical groups in order to deliver at a new hospital and be monitored weekly. If baby’s oxygen levels drop any lower, or he stops getting the bit of nutrition he’s getting, we have to deliver the baby. My husband and I leave his office quietly. I text my mom looking for some reassurance and the two of us drive the 50 minutes back home in our separate cars.

I was pulling into the driveway when the MFM doctor calls me back. He tells me he spoke to several of his colleagues in different hospitals and none of them feel comfortable with me being home at this time. They agree I need to be in a hospital where the baby and I can be monitored 24/7. He transfers my care to Westchester Medical Center in Valhalla (coincidentally where I work), and tells me to get back down there immediately for admitting. I’ll be there until the baby is born and, fingers crossed, that would be about 11 weeks later. I email my boss that I will not be in the office for quite some time, and that’s that.

September 1, 2018
Saturday morning I wake up around 6am and start cleaning my hospital room because I'm incredibly bored and visitors are not allowed until 8:30am. I’m hungry, and breakfast isn’t until 9. I drink my first Ensure high protein shake that my husband brought me to help with the protein deficiency. It gives me bad heartburn but nothing I'm not used to. I mention it to a nurse but I'm so used to heart burn at this point, I just suck it up.

I’d never had heartburn before until I got pregnant. Like a switch, as soon as the pregnancy stick read positive my heartburn kicked in. Totally normal. But terribly bad. I tried every OTC drug out there. Tums, Nexium, Alka seltzer. My OB ultimately prescribed me Pantoprazole to take every morning but it also does not help.

September 2, 2018
Sunday comes and I have another Ensure in the morning for the protein boost. Again I'm straightening up my room, family and friends come and go and all I can think about is everyone leaving so I can sleep.

My family leaves and hubby and I walk downstairs to my office so I can pump out some work that I knew I wasn't going to get to for the next few months.

We leave my office and I have right, upper-quadrant pain. Hubby suggests telling a nurse but because I know it’s just traveling heartburn, I decline. “It’s the Ensure. I’m not drinking them anymore. The heartburn isn’t worth it. It’s not baby related. I don’t need to tell a nurse. It’ll be better in the morning.” I tell him.

Because it's Sunday and he's been with me all weekend I send hubs to sleep at home. I give him a kiss goodnight, he leaves and I fall asleep. I’m awoken an hour later by a nurse who says my husband was worried since I didn’t answer his calls, and asks me to call him back.

My pain from earlier has gotten much worse but I still believe it to be an air bubble. I ask a nurse for something for heart burn. She tells me she’s still waiting for the attending to fill the order and that it will be a few minutes.

I head back to my room I’m feeling even worse, have a growing fever and am shivering. I'm panicking because nobody is listening to me and I walk out to the nurse’s station once again; crying this time. I apologize but explain something is not right. I need something for my stomach. She again tells me she can’t give a pill without an MD's order.

Soon after I start vomiting. Think ‘Exorcist’. I'm screaming in pain. Everything hurts. I'm crying in fear. I remember earlier that morning I accidentally set off the emergency bell, and 6 nurses came running in to assist all while I was eating my morning yogurt. I didn’t even know how I did it…

I feel like my ribs are being ripped apart. I press the emergency button on my remote and I get one soft voice that comes across from the intercom on the other side of the room asking me if everything is okay. “OKAY?!” I think to myself, “WHERE THE F* IS THE CALVARY?! WHERE ARE THE 6 NURSES TO MY RESCUE?!”… But all I can muster up is “I need a nurse.”

One nurse comes in again and hooks me up to the baby monitor to make sure I’m not having contractions. I text my hubby that I got the nurse but I don't tell him how bad it is because he's a worrier. Another nurse comes in and suggests calling him. I explain I don’t want to call him unless it’s an emergency because he has a 40 minute drive but she pushes and tells me it’s an emergency.

A few minutes later they rush me into labor and delivery on a wheel chair. At this point I'm throwing up and the speed of the chair and the air temperature change and even just the sitting up all has me spinning. I'm chanting, “I'm gonna throw up,” as we're wheeling past a bunch of pregnant mamas waiting to check in because they're normal and had normal pregnancies. I'm sure I scarred at least one of them.

They finally wheel me into the room. I spot a garbage pail, point, and as the nurse pushes me towards the bin, someone else rushes it towards me. I grab it and I throw up for what seemed like hours. They get me on the table and keep handing me blue “air sick” bags.

At this point, I'm in even more pain and I'm screaming out crying for them to knock me out.

They're trying so hard to get an IV in to get me fluids but my veins are all so dehydrated they're flat and everything just keeps blowing out. They call the anesthesiologist who still can't get a line in. I’m expecting to die at this point. After his 40 minute drive, hubby finally gets to me and I still don’t have an inserted line. I’ve gotten nothing for the pain so far. They're trying to reconnect me to the baby monitor but I keep squirming. They can't connect me so they're strapping me down. I'm jumping up because it hurts my back, I'm falling backwards because it hurts my stomach. I tell them I need to fold over on my stomach because it's the only way to make it hurt less but I can't because of the baby monitor. I think I cried out one last time for help when they finally got the IV in and I feel the morphine rush over me. It was so warm. Like a blanket. And I fell right to sleep.

September 3, 2018
Monday morning they start prodding at me, and it makes everything hurt again. My levels are elevated, I’m out of it and I look at my husband for answers. I'm quivering in pain again so they give me another push of morphine and I sleep another five hours.

I’m diagnosed with HELLP Syndrome. If I don't deliver the baby it will be fatal for us both.

My liver enzymes are in the 1300s and platelets are at 35,000. I can’t chance a spinal tap for fear that my blood won’t clot afterwards and I would bleed out. I’ll be totally knocked out during the cesarean. Because the baby is so small, they have to do a Classical C-Section, where the uterus is cut vertically. It’s a longer healing process and means that I can’t ever try for a VBAC with any future pregnancies but it’s my only option.

They take the baby out at 29 + 3 weeks, at one pound, thirteen ounces, twelve and a half inches long. I don’t get to witness his first breath, or first cry. He’s rushed to the NICU to be put on a ventilator and hooked up to machines. I open my eyes sometime late Monday afternoon in the recovery room just long enough to say hello to my family that came to visit. I fall back to sleep until midnight and I’m hungry. They can’t feed me; I’m on a magnesium drip.

September 4, 2018
I’m woken up mid-morning on Tuesday and wheeled back into my room in the Maternity Ward where my lunch is now cold; meatloaf…. for the vegetarian.

I see baby Jake for the first time more than 24 hours after he’s born. I don’t get to hold him until he is twelve days old.  My labs creep back to normal range and I spend another few days in the hospital.

I am discharged on my 7th day, September 9, 2018.

I thank my lucky stars to be alive to see my baby grow stronger each and every day in the NICU. To date, little JT has spent 64 days in the NICU, is getting bigger and stronger every day but still has a ways to go.

The bright side to this all, is that I have earned the privilege and right to spread HELLP awareness to everyone I encounter. This is not a disease that should go unnoticed. And I pray for early detection for other mama’s who might not be as lucky as me.

Stefanie is a Dutchess County mom who lives with her husband, George and their little fighter, Jake (who is currently growing and thriving still in the NICU). She hopes that by sharing her story she can reach other moms who have had similar experiences to know they aren't alone and spread awareness of HELLP Syndrome.