I’ve gotten a couple Facebook messages and emails asking if I’m OK because I haven’t posted in about a week or so.
The answer: sort of.
As many of you who have been around my blog for a while are aware, I’m a survivor of HELLP Syndrome and my son Daniel was born at 29.5 weeks in an attempt to save both of our lives. As a way of healing from what happened, I got involved with the Preeclampsia Foundation and I’ve been involved with the Promise Walk for Preeclampsia since 2011. This year, I’m the survivor speaker and they needed my speech last week because they’re using it for promotional materials. It was a really hard speech for me to write because it involved going back into a very dark place. I did get it written though and if you want to read it, click on “continue reading”.
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When I found out in October 2008 that I was pregnant with my son Daniel, my reaction was a mixture of joy and terror. There was joy because I was going to have a baby and the terror was there because of the realization that I had another life inside of me that I would be impacting. When I saw my doctor four days later for my first prenatal appointment, I remember her asking me about any history of preeclampsia in my family and not knowing what she was talking about. I mean, I knew my mom had twins but that was the extent of it.
My pregnancy progressed with minimal morning sickness in my first trimester and we found out at 5 months that we would be having a little boy. We already had plans to name him Daniel James and it meant that we now knew what colors to register for in terms of baby clothes. I was dealing with a little bit of nausea but I didn’t think it was anything I couldn’t handle. Then the fatigue hit and I started missing work due to the combination of that with the nausea. Still, my doctor didn’t think it was anything to worry about and thankfully my managers were understanding. I found that standing for long periods of time really stressed my back so I started just sitting through church and not doing a lot of standing at work if I could help it.
Around month 6, I started losing the feeling in my hands and when I went to the doctor about it, she commented that they were swelling. Being pregnant, the only thought was carpal tunnel so she gave me a water pill to take very sparingly and some hand braces. In hindsight, I think it was the first sign of what was to come a few weeks later.
The last week of March 2009, I had a neurologist appointment and when she took my blood pressure, it was 140/100. This was an eyebrow-raising thing but it wasn’t unusual for me to have a higher blood pressure when it was first taken and then for it to go down to normal by the end of the visit. This time, however, it didn’t. The next night, I was having some stomach pain so Jon and I went to the ER in the small community hospital near where we lived in Montana. My blood pressure was high and they found protein in my urine so the ER doc suggested I follow up with my doctor the next day. When I went to see her the next day, she handed me a container for a 24-hour urine sample and patted me on the head when I complained about having to do it at work, explaining that I was on bedrest until further notice.
The morning of April 5th, I woke up really nauseous and coughing from what I thought was a cold. My husband Jon was headed out of town and we made contingency plans for what to do if I ended up in the hospital. The next day, I felt worse and was completely terrified. I managed to drive myself the 25 miles into town where I had an appointment and when the doctor came in, I broke down sobbing and told her to put me on bedrest. They wheeled me to the hospital portion of the facility, put me on fluids, and I was able to have a chest x-ray which ended up showing the bronchitis that I was fighting at the same time. An hour after the x-ray, I got hit with severe nausea and pain in both my stomach and back that was making me curl up in a fetal position. They tried taking my blood pressure but every time they got a reading, it would spike even higher. After about 3 minutes of them taking and re-taking my blood pressure, they paged my doctor who ordered immediate lab tests. Probably 15 minutes after all this started, she came to my bedside and said, “Jen, you have preeclampsia. I’m transferring you to Benefis Hospital in Great Falls to the care of Dr. Key.” Dr. Key was my perinatalogist who I had met two months earlier when we were screening for Down Syndrome and hearing that I was being transferred triggered some pretty serious fear. She then called Jon and that was when I found out that my kidneys were starting to shut down and my liver was swelling, meaning that I had something called HELLP Syndrome. Shortly after, I was loaded into an ambulance and sent 90 miles south to Great Falls where they whisked me onto the maternity ward, took labs, and tried to take a health history. Thankfully, my mom called at that point and was able to answer all their questions.
My doctor walked in a short time later and said, “Jennifer! How are you doing?” Taking his hands in mine, he said, “Your platelets have dropped to 60,000 and we’re prepping the operating room as we speak to deliver your son.” My response shocked everyone in the room: “Great! What do I sign?” After signing all the pertinent paperwork, I was taken to the OR, given several shots in my back for spinal anesthesia, and laid on a table. After that point, I have a very hazy memory of them showing me Daniel before he was taken to the NICU, and no memory of anything else until 4 hours later when I woke up to our bishop Jessica stroking my hand and trying to explain to me that I had just had a baby. I spent the next 24 hours completely blissed out on anesthesia, pain medication, and magnesium sulfate while they tried to get my blood pressure down. When all of these things left my system, everything became very real and I’m thankful to God that my mother had gotten an emergency flight up to be with me because the next five days were postpartum depression hell as I wrestled with the feeling that this was all my fault, that if I’d done things differently I wouldn’t have a kid connected to machines in the NICU, and in terror over how exactly I was going to pay all these hospital bills that I knew would be coming. It took the NICU nurses a good week and a half to convince me that I hadn’t completely screwed up and thankfully the NICU social worker was able to explain that because my baby was so early and so small, he qualified for Medicaid and SSI which would take care of whatever my insurance didn’t.
I also soon learned that Daniel was a fighter and despite being born at 29.5 weeks and weighing only 1 lb 15 oz. at birth, he was going to make it. They predicted it would be a 3-4 month hospital stay and instead Daniel came home on his 2 month birthday. The only issues he really manifested were an inguinal hernia which was repaired at 5 months and ROP which reversed after 4 months. In the 5 years since, we’ve faced developmental delays with him and a diagnosis of autism. It’s been an interesting 5 years but definitely 5 years that I wouldn’t trade for the world.
Looking at all of this five years later, I’m realizing that I wish I had been more familiar with the symptoms of preeclampsia so that perhaps we could have caught them sooner and maybe given Daniel some more time to develop. I had no idea that the history of hypertension on both sides of my family could predispose me to it. 2.5 years ago, I had to start medication for hypertension and I think that the HELLP Syndrome was part of it. They still monitor my liver enzymes quarterly and I’ve suffered damage to my short term memory as a result of my blood pressure spiking that way.
As a way to deal with the trauma and pain of Daniel’s birth, I decided to make the Preeclampsia Foundation my cause for Blogathon 2009, a fundraiser I was involved in where participants post on their weblogs every 30 minutes over a 24 hour period. I raised over $300 for the Preeclampsia Foundation and found a place to tell my story. Another benefit of this is that I’ve had other blogging outlets to talk about what I went through and my friend Kate actually caught her preeclampsia early enough that they were able to get her to almost full-term with her son Gus before she had to be delivered.
In January 2011, I got involved with planning the Promise Walk in San Jose. While I did have to withdraw from planning due to Daniel ending up at UCD Medical Center for 3 weeks (thank you preemie lungs and RSV), I got to know Tiffany Trevers and it was incredibly healing to talk about everything I had been through with her and to find out that all the developmental delays we were facing with Daniel because of him being premature were not completely unheard of. I’ve participated in the walk every year since, with this being my 4th year.
So in closing, why is it necessary that pregnant women receive preeclampsia education and support? It is necessary because women like me should not almost die in childbirth from a condition that people only know about because of Downton Abbey. It’s necessary because women like me should not have to know phrases like “emergency c-section due to HELLP Syndrome with 30% placental abruption”. It is necessary because it is a leading cause of maternal deaths in the Third World. It is necessary because all women should be able to carry their babies to term without complications.