My mother called me at 5:30 Monday morning and I instinctively knew something was very wrong. Mom was calling about my sister and though she was calm, her voice was shaking;
“Leila had the baby last night. The baby is doing fine. Leila is not. She has bleeding on her brain and the doctors said things do not look good. She has no neurological activity and is in a coma on life support…we don’t know if she will make it…”
I asked my mom what happened, and she said “they aren’t sure.” I asked her what I needed to do, although there wasn’t much I could do but wait.
So I waited and my mind raced. I researched “blood on the brain” to keep my mind occupied and replayed the information mom had given me: Leila was having severe abdominal pain, but they weren’t contractions. Her husband, Sky, called mom about 2:30 am and said the pain started around 9:00 pm. Mom said to take her to the emergency room immediately. When they got to the emergency room Leila vomited on the floor then said, “I’m so sorry…” She was taken into a room, monitored for a bit, then had a seizure and never woke up. The doctors were able to save her baby, a boy, through C-section, and he was doing great.
Mom called an hour later and said, “I need you to call your siblings and tell them what is going on. Tell them that if they want to say goodbye to Leila that they need to come to the hospital.”
I called my six other siblings, two of which were out of state. Everyone asked, “What happened?” and all I could tell them was, “they don’t know.”
The oldest of eight children, my best friend and sister, Leila, was a bright, happy, friendly lawyer. Sounds weird, right? She spoke Spanish and had her own law practice, practicing family law, often representing children in divorce cases for both Spanish and English speaking families. She taught youth and children, and played the piano in the LDS Church. She was three-years single, free from a previous marriage, with no children, although all she ever wanted to be was a mother and have a family.
Leila met a man named Sky, and they got married at my parent’s property in Missouri on August 1, 2012; her twenty-seventh birthday. They were later sealed in the Kansas City Missouri LDS Temple.
A few months later Leila announced excitedly that she was pregnant! We were all so thrilled for her. Leila called the hospital near her home to see if they had any pre-pay maternity plans. They told her their plans and she thanked them. She started to look into a midwife to see if it was more cost-effective.
Leila called the hospital back when she was 20 weeks pregnant to make an appointment, and then called me crying. The hospital staff told her that since she had not had any previous appointments she was considered a “high-risk pregnancy” and that she had “done horrible things for [her] baby” and that they would not accept her as a patient. Leila felt then that she had no other choice but to have a midwife.
Leila had severe morning sickness in her first trimester, but never complained because she was so happy to be bringing a life into the world, so happy that she would have the chance to be a mother like she had always dreamed.
Everything seemed to be progressing well in her pregnancy. Mom noticed some swelling in her legs and ankles that never seemed to go away and suggested that Leila go see a doctor to make sure that everything was okay.
Leila went to see her husband’s diet doctor who happened to be an OB. The doctor agreed to run testing for Preeclampsia. Leila contacted the doctor’s office to find out the results of her testing, but could not get any information regarding her tests from the doctor’s office. Taking matters into her own hands she called the lab herself to request the results, which they sent to her. The tests came back showing high platelets. No indication was given that further testing was needed because she was not a patient of that doctor or hospital.
An Unwelcome Surprise
We had no idea that anything else could be wrong. We thought, “She doesn’t have Preeclampsia! Great! She just needs to rest more and keep her feet up.” We didn’t know there was anything past Preeclampsia. The midwife signed off on her own records saying that Leila needed to see a doctor.
Leila was with us for several days the week before she died. She threw up (another sign of HELLP, unknown to all of us) on Thursday. Mom had her put her feet up because the swelling was so bad, but the swelling never seemed to get any better. It seemed odd that resting and putting Leila’s feet up never helped. Leila also cancelled plans with us and friends, which wasn’t like her.
Then the phone call came from mom.
Those of us who were in Missouri quickly made our way to Shawnee Mission Medical Center where Leila was. My dad was in the middle of the Indian Ocean on a ship while the company he worked for moved their oil rig. My brother was stationed at Camp Pendleton, trying to get a flight to Missouri. Another sister and her husband were packing up their eight-month old daughter to drive to Missouri from Idaho.
We were taken from the common waiting area to a private waiting room in the intensive care unit. Visitors were limited to 3-4 people in Leila’s room at a time.
Later that day the neurologist came to us and said, “I have no good news for you,” and that Leila would not survive. They still had no explanation of why she had bleeding on the brain.
Leila remained on life-support per her husband’s decision until Saturday, although we all officially said our goodbyes on Tuesday, the day following the incident. On Thursday the OB who tested Leila for Preeclampsia said that he thought that Leila may have had HELLP.
What is HELLP?
HELLP? That’s a thing? It’s pretty ironic that the acronym sounds like the word “help” when no one could explain it. The hospital staff tried to help us understand by saying things like, ‘HELLP is hemolysis elevated liver enzymes low platelet count’, which of course, made no sense to any of us. We asked how it happens and the answers were vague. It seemed they only knew as much as we could find ourselves on the internet. Mom, who has had eight children had never heard of it.
According to preeclampsia.org “A suspicion of HELLP syndrome can be frustrating to the physician when all requirements for its certain diagnosis are not apparent.” Explanation from preeclampsia.org goes on to say, “In some patients who are developing HELLP syndrome the primary preeclampsia indicators of high blood pressure and protein in the urine may not be present, and it’s symptoms can be mistaken for gastritis, flu, acute hepatitis, gall bladder disease, or other conditions.”
Leila passed away on August 10, 2013, five days after giving life to her son, though she was never conscious to hold him. She had just turned 28 and celebrated her one-year wedding anniversary on August 1.
Shortly after Leila passed away I found out that I was pregnant. I like to say that Leila pushed this baby out of Heaven for me (because I was never planning on having kids).
In my initial visit to the OB I was asked, “Have you ever had Preeclampisa?” My response of, “No, but my sister died of HELLP in August,” was met with, “Oh yes, I’ve heard of that”, and nothing more has been said of it.
As with Jamie’s story the doctors assumed Leila was fine because she did not test positive for Preeclampsia. Although she had high platelets, nothing more was done. If you know something is wrong, then fight for your life and find a doctor who will help you. If you test negative for Preeclampsia ask your doctor if you might have HELLP. It could save you.
Alisha is from Utah and has been married to Missouri-native, Nathanael, for almost three years where they now live. She is a stay-at-home-mom to a two-year old boy, with a baby due in May. She blogs at LDSNEST.COM.