How can there be so much joy and heartache wrapped up in one human body? How can you be whole and missing at the same time? We hurt and we heal, hurt and heal–because some pain never really goes away.
August is a weird month for me. For everyone in our family really. It’s the month our oldest sister was born and also the month that she gave birth to her first born and died. I’m not really sure what order those last two things happened. And every year I think I won’t mention this story…but I’m putting it out there again. We all process pain differently, and one of my ways is through talking about what happened rather than keeping it trapped inside.
Leila was everyone’s best friend; a bright, happy, friendly lawyer who loved making gourmet cupcakes and getting to know everything about the people around her. She graduated high school two years early, went directly to BYU, taught herself Spanish, was licensed to practice law in three states, and eventually, 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 a religious ceremony in the Kansas City Missouri LDS Temple.
A few months after their marriage, Leila told us she was pregnant! This was everything she ever wanted! Leila called the hospital near her home to see if they had any pre-pay maternity plans, but she started to look into a midwife to see if it was more cost-effective, as she didn’t have health insurance.
Leila called the hospital again 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.
Welcome to healthcare in the United States.
So Leila felt then that she had no other choice but to have a midwife—and while so many women have had successful pregnancies with a midwife, this wasn’t’ the path she was comfortable taking.
Everything seemed to be progressing well in her pregnancy, aside from the sever morning sickness—but she never complained because she was so excited to be a mother. In the third trimester our mother noticed some swelling in Leila’s 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 something was off with her platelets. No indication was given that further testing was needed because she was not a patient of that doctor or hospital.
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 beyond Preeclampsia. But the midwife knew something was going on that she couldn’t take care of and signed off on her own records saying that Leila needed to see a doctor. But Leila wasn’t able to.
Leila stayed with my parents for several days in her third trimester before being taken to the ER. She talked about how she just didn’t feel good. She threw up (which turns out, is totally NOT normal in your third trimester) on Thursday. Our mother had her put her feet up because the swelling was so bad, but the swelling never seemed to get any better—so she had to cancel plans with us and with friends, which she never did.
The following Monday, on Aug. 5, 2013 I woke up to a phone call at 5:30 am from my mother and she said:
“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 and was asked to call my sister’s local church authority, which I did and apologized profusely to the bishop’s wife who answered the phone so early in the morning.
Then, we waited. I Googled “blood on the brain” to keep my mind occupied—which doesn’t help, btw, and replayed the information mom had given me: Leila was having severe abdominal pain, but they weren’t contractions. Her husband, Sky, called my 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…” then had a seizure and never woke up—she was 8 months pregnant at the time and the doctors were able to save their son by placing her on life support and performing an emergency c-section.
My mother called me 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 don’t know if you’ve ever had to call your siblings and tell them that their big sister was dying, but it is rough. I’m a type 7 if that helps any of you out. So I called my six other siblings, everyone asked, “What happened?” and all I could tell them was, “they don’t know.” Thankfully my sister-in-law was with the younger ones and was able to drive them to the hospital an hour away.
Honestly, it’s been so long that it’s hard to remember what everyone else was doing. So I’m just recapping what I personally remember. I do remember that I broke down on the last call to one of my siblings and Nathanael had to take over the conversation from there because I couldn’t breathe—but you also can’t just text about that, you know?
So those of us who were in Missouri quickly drove to Shawnee Mission Medical Center where Leila was in the ICU on life support. My dad was in the middle of the Indian Ocean on a ship while the company he worked for moved their oil rig. One of my younger brother’s 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.
Eventually we were all in the ICU waiting room with some of Leila’s best friends and a couple of clergy, but 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. Lots of tears, texts, and phone calls—you know. ICU things.
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. I have so much respect for that man—he came with so much sympathy, but also, didn’t bullshit around the reality of the situation. He said we basically have two choices; artificially sustain her life though she had zero brain activity, or let her go and then he left us to discuss.
The majority of us agreed that Leila wouldn’t want to be on life support, but until everyone agreed she would STAY on life support. I think at one point on Tuesday it was decided that we would let her go because we officially said our goodbyes, but then someone changed their mind or something and we were back to waiting. So many people came to the hospital to bring us food and comfort that week; Leila’s neighbors/coworkers/friends, our family. Childhood friends. So many people that we cannot thank enough.
On Thursday the OB who tested Leila for Preeclampsia said that he thought that Leila may have had HELLP.
HELLP? That’s a thing? It’s pretty ironic that the acronym sounds like the word “help” when no one could explain it. I’m pretty sure I LOL’d about 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. Even our mother, who has had eight children had never heard of it. My mother-in-law, who has had 11 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.orggoes 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.”
Basically, what happens with HELLP is that your organs start shutting down, and that’s what had happened to Leila. The staff at Shawnee Mission was incredible and empathetic; they brought their baby boy up from the NICU to have skin to skin contact with Leila—and even though she wasn’t conscious and had zero brain activity, her vitals would go up every time she had skin to skin contact with her son. The nurses couldn’t stop talking about it and it was just a beautiful gift to witness.
By Friday it was agreed we would take her off of life support. She was a donor, so the donor foundation went through the process of finding matches for her organs which took about 24 hours. Then she was taken down to a hospital room next to a surgery room to “expire”—this is where they pull the plug and she has 60 minutes to “expire” naturally where her organs are still viable. However, she didn’t pass within the time frame, and was taken back to the ICU, but not placed back on life support. About 10 minutes later I asked my brother if he would be okay leaving to take me home and he said yes. About 10-20 minutes later we got a text from my mother saying “She’s gone”.
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. A year later, her husband died as well. My parents raise their son and he is such a sweet, intuitive boy, definitely connected to his angels.
That’s a lot to take in. It’s a lot to read. And sometimes I’m like, why even share this Alisha, it’s so deeply personal—and it is. But it’s also crucial for women who are pregnant or planning on being pregnant. Not nearly enough is known about HELLP Syndrome and it’s far more common than we think. You need to be aware of it so you can talk to your doctor about it. When I was pregnant with my second son, I had SO MUCH ANXIETY because of what happened to my sister. During the new patient interview they ask if you’ve had Preeclampsia or if there is a history of Preeclampsia in your family. And I thought I was chill to answer this question, but started crying as soon as I opened my mouth, and said, “No, but my sister died this past August due to HELLP Syndrome”.
And my doctor’s response?
“Oh, I’ve heard of that”.
I loved that doctor to death, and she was incredible during labor and delivery, like, literally wore combat boots to my labor—but she had very little idea of what HELLP was. So, as with anything in healthcare, YOU need to be informed as well. YOU need to bring up HELLP to your doctor. ♥
Resources for learning about HELLP:
So now we eat cupcakes on Leila’s birthday and celebrate the life she lived. It doesn’t mean we aren’t still sad, because we are—but it’s a tradition that brings a little healing and happiness every time. Talking about our loved ones keeps them alive ♥