Preeclampsia Awareness Day

My Birth Story & Journey through Hellp.

Today is Preeclampsia Awareness Day, on this day, to predict, prevent and prevail, I want to share my birth story and my experience through Hellp syndrome.

First, here is some information:

Preeclampsia is persistent high blood pressure that develops during pregnancy or the postpartum period and is often associated with high levels of protein in the urine OR the new development of decreased blood platelets, trouble with the kidneys or liver, fluid in the lungs, or signs of brain trouble such as seizures and/or visual disturbances.

HELLP syndrome (usually considered to be a variant of preeclampsia) is a rare but life-threatening condition that occurs in 0.1% to 1% of pregnancies. It causes red cells in the blood to break down. It also causes problems with the liver, bleeding, and blood pressure. It is often linked with preeclampsia and eclampsia. It often develops before delivery. But it may also occur after delivery. The letters in the word HELLP stand for:

• Hemolysis. This is the breakdown of red blood cells.

• Elevated Liver enzymes. Damage to liver cells causes changes in the way the liver works.

• Low Platelets. Platelets are cells in the blood that help the blood to clot to control bleeding.

HELLP syndrome can be difficult to diagnose, because all of the typical signs of preeclampsia may not be apparent. Early diagnosis is critical because serious illness and even death can occur in about 25% of cases. As a result, patient awareness of HELLP syndrome, and how it relates to preeclampsia, is helpful to ensure the best medical care for mother and baby.

Now, here is my story:

Today, my husband and I are going to our 35-week checkup with our midwife, where we will be planning our birth. The pregnancy is still healthy, besides some consistent Braxton-Hicks, both baby and I are doing very well. So we happily decide to plan for another natural water birth, similar to the one we had with our son. That evening, I don't feel well and I am warm, I go to bed with some stomach pain, but I don't think much of it. The pain persists, I can't sleep yet I'm drowsy, no position helps the pain, I am burning up and somewhat delirious, but I don't want to wake up my husband or make a fuss about it, so I don't say anything.

In the middle of the night, my husband wakes up to find me writhing in pain. He immediately calls for emergency assistance, and we go to the hospital. We leave our 14-month-old son with his grandmother, expecting to return within a few hours, not knowing that I wouldn't be back for almost a month. Things escalate rapidly at the hospital. The pain is worsening, and I feel increasingly unwell. I know what giving birth feels like, that is not it. I am scared, all I can think of is that I don't feel my baby moving and I can't remember when was the last time I did. They are checking on us and I am relieved when they hear her heartbeat, yet their faces look concerned. Everything goes fast from here, five minutes later, I am rushed into the emergency room because they discover my placenta has detached, our baby girl isn't receiving enough oxygen, and her heartbeat is declining. I am pinned down on the table, a mask forced on my face. I am given an epidural, my husband is now with me in the room, as shock as I am. The moments after they deliver her are the most agonizing of our lives. She isn't responsive, and the doctors are silent, we keep asking “is she okay?”, “is she breathing?” but they stay unresponsive to our pleas. I pray for her to make a sound, to breathe, and thankfully, our little fighter answers my prayers. At 3.1 kilograms, she is strong and alert.

While my baby go to the neonatal unit with my husband, I am taken to the recovery room. Fortunately, she is improving, but my condition is not. The details of that first day become hazy from here. I remember feeling extremely unwell and longing to see my baby. I am nauseous, I receive blood transfusions, and I am having more and more difficulty breathing. Eventually, I am wheeled into her room briefly, but I barely have a chance to glimpse at her before I vomit and am brought back to my room. My lungs are failing. The medical team tries various treatments, including medications and fluids, but my condition worsens.

Suddenly, I am rushed to the ICU, after a nurse had insisted on additional blood tests beyond what the doctors had ordered. This led to the discovery of a severe and rare case of HELLP syndrome. My husband accompanies me, and I painfully remember being administered a high dose of magnesium that feels like fire coursing through my veins. Multiple organs failed: my liver, stomach, kidneys, and my lungs collapsed. Over the next few days, I drift in and out of consciousness. When awake, I experience excruciating pain throughout my body, and the nurses continually check my reflexes every five minutes, to ensure I am not brain dead because of a seizure. Due to the delayed diagnosis, I have accumulated excessive fluids in my body, causing me to swell like the Michelin Man. Eventually, my condition worsening, I have to be put under dialysis for a bit less than a week, which save my life. I am traumatized by everything that unfolded—the guilt of not acting sooner on that fateful evening, almost losing my daughter, and looking at my flat stomach, not pregnant anymore but with no baby in my arms.

The medical staff relentlessly work on my condition, but my kidneys remain in a terrible state. My daughter is released from the neonatal unit after a week, but not to further traumatize me, she and my husband (my rock and lighthouse in this storm) are allowed to stay with me, and for that, I will forever be grateful to those who made it possible.

I spend ten days in the ICU, followed by transfers to other departments. I remain extremely ill, unable to move or do anything. I battle a mysterious blood infection, severe kidney issues, frequent blood transfusions, pain, fever, skin falling off my hands, but none of this compare to the anguish of being away from my son for such a long time. Although my amazing parents-in-law took excellent care of him, not being there for him cause more pain than any physical suffering I endure. He visits me when I am stable, but he often fails to recognize the pale image of his mother confined to a hospital bed.

For the first time since everything began, I comprehend how close I had come to death, and the uncertainty of when or if I'd leave the hospital loom over me. I can't even fathom the trauma my husband endured, caring for our premature baby while fearing for my life and witnessing the entire ordeal. Guilt was his constant companion, feeling torn between being with our baby or me when needed.

Two weeks after giving birth, I wake up with excruciating lower back pain, and no amount of morphine or painkillers provide relief. I am transferred to Denmark's largest hospital, where specialists are already involved in my case. From that point, things gradually improve. Every little symptom I experience is carefully examined and addressed. We discover I have traces of water in my brain, which explain my altered mental state, though fortunately, I don't experience edema.

One day, like a fog lifting, my mental state improve. I decide to go home, pushing the saying "Mind over Matter" into action. I devote all my strength to the endeavor—eating, physiotherapy to relearn how to walk, managing basic bodily functions, and caring for my baby. I show everyone that I am getting better. And I am, my numbers are showing a slight improve. Even against some doctors' reservations, I am granted permission to leave the hospital, and although I remain extremely weak with my kidneys in poor condition, I am on the path to recovery. The initial two weeks at home are challenging to say the less, but with the constant support of my incredible parents-in-law, we manage to get through it.

The period afterward feels very isolating, as I don't know anyone who had experienced something similar. I have numerous unanswered questions, and I have to research much of it myself, which is how I learn about the long-term impacts of the illness.

I go to therapy to help me deal with the trauma. In order to heal, I also have to grieve the birth I didn't have, the time I lost with my newborn daughter but also my son, and the postpartum bubble I will never get. Reading the testimonies of other women plays a significant role in my healing process and offers invaluable support, which is why I want to share my own story in hopes of contributing to someone else's recovery.

Going from being very healthy and active, to the brink of death and then being unable to walk, move, breathe, or perform basic bodily functions was an incredibly humbling experience. It is sad how we take those things for granted and are only grateful for them when they are taken away from us. I am immensely grateful to be here today with my family. From this journey, I focus on the kindness we received, the exceptional care provided by the nurses (without whom I wouldn't be here, the real heroes of this story), and the inner strength and resilience I discovered within myself. I've learned the importance of advocating for myself, and I hope my story inspires you to do the same. I will never again hesitate to seek help when my health is at stake.

My case was unique in that I had no symptoms before my daughter's birth. Nonetheless, awareness and understanding of this rare condition are crucial, and I hope my experience sheds light on the importance of advocating for your health and the health of your baby. To all postpartum mothers, take care of yourselves and pay attention to your well-being.

For more information on Hellp Syndrome and Preeclampsia: https://www.preeclampsia.org/hellp-syndrome