HOUSTON – Imagine this…
You’re 31 weeks pregnant, excited to become a new mother, and to bring a newborn baby into the world with your husband.
After a standard taco and movie night, you wake up the next day and suddenly feel dizzy, lightheaded, faint, and nauseous.
Your loved ones rush you to the hospital, you go through standard operating procedures and then your doctor returns with one word.
One diagnosis.
You think to yourself, “Wow, I have never heard of this word” despite it impacting 1 in 25 pregnancies around the country.
After that, we were quickly made aware that the only two possible outcomes at that point were delivery or worse, death.
Your first thought is, “This sounds serious.” And, “How could this have been prevented? What could I have done differently? And what are the next steps?”
Your second thought, at the suggestion of the doctor, is “How quickly can I deliver this child before the point of fatality for him and myself?”
That’s the horrific situation I found myself in about five years ago.
I was diagnosed with Pre-Eclampsia at a Houston area hospital, told that I had about 24 to 48 hours to deliver our baby, and then was immediately transported to the Texas Medical Center.
After arriving at the TMC on Thursday, August 8, 2019, I was surveyed by their medical staff and, despite the previous prognosis, told that the Pre-Eclampsia was at a level to which they could maintain it and that we would try to keep me hospitalized for the next four weeks.
Ignorantly, we obliged. I started my hospital bid and remained hospitalized for the next four days when things slowly but dramatically began taking a turn for the worse.
Throughout the weekend, several complaints of pain were made by myself and my family members however we were told that there were no doctors available, and we would have to wait until they made their rounds.
Truthfully, I recall asking for medical attention more than six times to no avail, at which point we contacted the charge nurse who promised to send a doctor in.
My vitals were checked before bed on Saturday night, around 7 p.m.
The morning of Sunday, August 11, 2019, was the fateful day when everything took a turn for the worse.
At around 9 a.m., my child’s father prepared to head to out for the day.
About an hour later, I began feeling an unbearable amount of pain and realized I hadn’t been monitored or checked on within the last 12 hours.
Strange.
After calling my assigned nurse multiple times while feeling excruciating pressure in my lower pelvis, I was then met by a medical student who she sent in, given a Tylenol, and told that my nurse was helping someone else with a ‘bigger issue’ down the hallway.
At the time, I was the highest-risk patient on the Women and Children’s floor of the hospital. But my multiple cries for pain went unheard.
After about two hours passed, while I was in dire pain, my nurse came in and attached me to the baby monitor.
Too stunned to speak, she uttered the most heartbreaking words I’ve ever heard.
“There is no heartbeat.”
Confused, stunned, and in disbelief, I watched as a team of medical professionals swarmed in, thinking to myself, “Where were all these people a few moments ago when I needed them?”
The nurse told me to turn my head to the Ultrasound machine, and pointed at where my son was, saying “Look, the heartbeat is supposed to be right here. There’s nothing.”
Unbearably, I starred and was scared forever at the death of my son.
If that wasn’t enough, my body began to progress into the HELLP syndrome, which will be defined more in-depth below.
Basically, as a result of not delivering immediately, my body was also turning off. Doctors said that my body was no longer responding to the medication used to induce and that a mandatory C-section to remove the now-deceased fetus was the only way I would survive.
While preparing me for surgery, my husband arrived at the catastrophic scene. At my side, I told him I felt something coming out of me. I had begun passing blood clots that were, in his words, the size of paper plates.
At that point, the anesthesia began to quickly set in for me. My husband was escorted to a viewing room while the doctors tried to force labor.
During the emergency C-section, doctors said my body was filling up with fluid quicker than they could do what was needed. I was losing platelets at an abnormal rate, and my veins were collapsing, causing the previous IV points to be unsuccessful.
They had to enter through a PICC line in my neck and give me four blood transfusions due to the amount I was losing in real time.
A stand-in doctor who was the lead surgeon in my case went to both my husband and mother and said, “Her body is not responding to the surgery correctly. Prepare for extreme disaster.”
At that point, my HELLP syndrome was rapidly developing into DIC disorder, which will be defined in-depth below.
My son’s father was then handed a funeral home catalog. And then, the doctors handed him our deceased son.
He took what he says was the longest walk of his life. With our baby in hand, he walked out of the OR and into the room where my family and friends were gathered.
After nearly 10 hours of life-saving surgery, the removal of the fetus, and the reconstruction of my body, I slowly opened my eyes.
To my surprise, I could hardly see a thing. It looked like someone had pressed on my eye for a long period of time, then trying to open them and having the majority of the line of vision covered up by large, black spots. The areas I could see a bit out of were extremely blurry.
The next steps were a series of tests being run on me for about a week, heavy monitoring and doctor’s visits, and a sore, post-C-Section body.
But not one single surgical wound or poke of a needle compared to the pain and heartbreak of walking out of the hospital empty-handed without my son, Denim Amari Johnson.
And then dealing with postpartum minus a baby… that’s a whole different conversation for a different day.
So, let’s get into the facts. What exactly is Preeclampsia?
Pre-Eclampsia, formerly called toxemia, is a disease that shows itself with persistent high blood pressure that develops during pregnancy or the postpartum period and is 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, according to the Pre-Eclampsia Foundation.
What should I look out for during my pregnancy?
- Important symptoms that may suggest preeclampsia are
- Headaches
- Abdominal pain
- Shortness of breath or burning behind the sternum
- Nausea and vomiting
- Confusion
- Heightened state of anxiety
- Visual disturbances such as oversensitivity to light, blurred vision, or seeing flashing spots or auras
Preeclampsia and related hypertensive disorders of pregnancy impact 5-8% of all births in the United States.
Most women with preeclampsia will have healthy babies and fully recover. However, some women will experience complications, several of which may be life-threatening to mother and/or baby. A woman’s condition can progress to severe preeclampsia very quickly. The rate of preeclampsia in the US has increased 25% in the last two decades and is a leading cause of maternal and infant illness and death.
Preeclampsia and other hypertensive disorders of pregnancy can be devastating diseases, made worse by delays in diagnosis or management, seriously impacting or even killing both women and their babies before, during, or after birth.
What is HELLP?
HELLP is usually considered a severe form of preeclampsia, but some experts consider it a different disease.
Preeclampsia leads to high blood pressure (hypertension) and proteinuria (high levels of protein in your pee). HELLP syndrome typically occurs with preeclampsia, but you can also have preeclampsia without HELLP. About 1 in 5 cases of HELLP syndrome occur without elevated blood pressure or protein in your urine.
About 8% of all pregnant people in the U.S. will develop preeclampsia, and up to 20% of those people will develop HELLP syndrome.
How common is HELLP syndrome?
HELLP syndrome is very rare and occurs in 0.1% to 0.6% of all pregnancies.
What is Disseminated intravascular coagulation (DIC) disorder?
According to the National Heart, Lung and Blood institute, Disseminated Intravascular Coagulation (DIC) is a rare but serious condition that causes abnormal blood clotting throughout the body’s blood vessels. You may develop DIC if you have an infection or injury that affects the body’s normal blood clotting process.
DIC progresses through two stages: overactive clotting followed by bleeding.
In stage one, overactive clotting leads to blood clots throughout the blood vessels. The clots can reduce or block blood flow, which can damage organs.
In stage two, as DIC progresses, the overactive clotting uses up platelets and clotting factors that help the blood to clot. Without these platelets and clotting factors, DIC leads to bleeding just beneath the skin, in the nose or mouth, or deep inside the body.