The Road to Recovery from a HELLP Syndrome Pregnancy

Post On Monday, January 30, 2012 By Jill

The Road to Recovery from a HELLP Syndrome Pregnancy

Within 6 months of our wedding day in October 2003, my husband Jeff and I unexpectedly found out we were pregnant. Like all happily expecting, first-time parents, our trepidation grew into excitement and joy as my belly grew and both of us devoured What to Expect When You Are Expecting.

We found out in May that I was pregnant and spent the summer debating which of the NYC borough names would be most appropriate for our offspring. . . you see, I had decided long ago that I would name my children after my favorite city and we had nailed down the name if the child were to be a boy. Fletcher Manhattan. But there was still a bit of a debate going on for the potential girl’s name.

So, it was kind of ironic that 7 months after we found out I was pregnant, I would wake up with Jeff at my hospital bedside saying to me, Do you want to name her Brooklyn or Manhattan?

He was asking me to somehow give him guidance on what we should name our baby girl. He even asked me to blink once for one and twice for the other that was about all I could control at that point, the blinking of my eyes!

That really wasn't my FIRST memory after waking up. . . there had been nurses leaning over me saying, You need to get better so you can go home and take care of your baby,and I had no idea what they were talking about. Feeling my wrists bound so I wouldn't tear out my central line or breathing tube. Having seizure-like events when everyone would rush around me screaming, Jill, Jill. Seeing an endless parade of doctors saying, Squeeze my finger. . . pointless because they had to wrap my hand around their fingers. . . there was no squeezing to be done!

Life had really turned on a dime for us. . . and we never, never saw it coming.

I got to that point a good 10 weeks before my due date after having had one high-protein urine test and calling my doctor to get results of the second. That one also came back high so my doctor suggested I come in that afternoon to have my blood pressure checked. When I did, she told me I had earned a vacation in the hospital and admitted me right away.

I received steroid shots so the baby's lungs would develop and was told I wouldn't leave until after the baby was born. I remember thinking 8-10 weeks in the hospital would be a long time and how would I ever get the nursery ready. But, I lay on my side, tried to do some work on my laptop, and attempted to get an absentee ballot for the upcoming presidential election from a politically like-minded nurse. That was the first 24 hours which represents the last things that I clearly remember for at least 9 days. . . when the squeeze the fingers started up!

Within another 48 hours, I was given an emergency c-section which was supposed to lower my blood pressure and bring me out of danger. I gave birth to a 2 lbs 9 oz. baby girl.

But, instead of coming out of danger, my blood pressure continued to rise. It rose so high that I suffered multiple organ failure, a stroke, and was in a coma-like state for those 9 days.

I am only able to report what others have told me and what I read here in my discharge report. . . descriptions like: intubation, extubation, rising creatine, not responsive to pain stimuli, cerebral edema, acute renal failure, acute tubular necrosis, post dialysis disequilibrium syndrome. . . ultimately, all of that led to a severely damaged liver. This was me in November of 2004.

I have absolutely no recollection of giving birth to my baby but I do have vague memories of what was probably the second time I saw her. Through the fortuitous visit of a friend with a video camera, we have it on film. My now seven-year-old daughter still loves to watch it but it is still disturbing and heartbreaking for me to watch because, not only do I look like such a zombie, but I need a nurse to help me touch my own 2-and-a-half pound baby! After suffering from the stroke, I was unable to move or talk or do anything at all be gaze in amazement at this tiny little creature as the feeding tube, central line, and chest tube kept my jaundiced body functioning.

Even though I felt completely foreign and detached from that creature on my chest, I eventually came to realize how I shared an odd connection with her.

You see, we were both entering the world her for the first time and me for the second time. But, in more ways than I liked, I was in a similar position to her. Once all of this had passed us, my family told me the parallels they drew and the questions they asked who will walk first. . . Jill or the baby. . . who will talk first. . . Jill or baby?

And, sadly, who will be out of diapers first. . . Jill or the baby?

I am happy to report it was me on all counts, but it did mean that the first three months of my daughter's life I was away from her in the hospital and then in the Rehab Institute of Chicago.

Those first months were a gradual progression: of regaining the ability to lift my hand; of transferring in and out of a bed first by sliding on a board with assistance and then on my own; of being so bloated that I had to wear my husband's size 10.5 shoes (I wear a women's 7); of my sheer amazement that day I took my first step in the parallel bars; of sitting on these big mats that could be raised and lowered to varying heights and keeping track of from how many inches above the floor I was able to rise on my own; of finally getting my feeding tube removed and starting to enjoy food again; of learning how to function in a mock apartment at the Rehab Institute of Chicago while in a wheelchair and getting frustrated at the difficulty of trying to put a weighted cabbage patch doll into a crib from the chair, so just giving up and throwing it in! My occupational therapist saying, "That's not going to work, Jill."

I came home 98 days after giving birth.

Even when I did get home to my baby (after all those weeks of hospital bed rest during which I lost every bit of muscle tone that I may have once had), I was too weak to hold our baby for more than a few minutes and, forget changing her, because I couldn't stand up long enough without getting dizzy.

As I regained mobility, it became painfully obvious that my body was never, ever going to be the same again. For anyone who has gone through a really serious illness and is, in some ways, granted the luxury of not being aware of it as I was, one of the really hard things to deal with is the fact that when you regain your faculties enough to know how really screwed you are, your family is finally breathing a sigh of relief, knowing you are out of those proverbial woods.

I don't think I fully appreciated the roller coaster they had been on until I went to see my neurologist months later to get the clearance to drive again. I had seen so many doctors many of them remembering me before I did them because I had been so out of it in the hospital

My visits back to the hospital would be so odd. . . I would see someone and immediately be transported back to dialysis or breathing treatments or some other care they had given to me. By the time I was seeing the neurologist, though, I thought I had encountered all of my past caregivers. . . I wasn't sure if this guy was even one that had seen me or not, all I knew was that I didn't want to take the medi-van to outpatient therapy anymore! So, when I said to him, you may have seen me when I was in the hospital and he immediately answered, "No, I never saw you," I didn't think much of it; but went on to explain that I had been ill after giving birth and was hoping to get the okay to drive again.

He paused for a moment, looking at my records, and said, "Oh, you're Jill Siegel. . . you are the sickest person to EVER leave this hospital alive."

I had already come to the realization of how really messed up my body was,even though I was becoming much less interesting for my doctors and they were giving me clearance to get on with my life. I really couldn't wrap my mind around the idea that I was recovered. . . or that what happened to me could be dismissed so easily!

I needed to do something that would prove to myself that I had recovered. I entered the lottery for the New York City marathon in the fall of 2005 and learned early the next year that my entry had been accepted. Gulp! I had never run a marathon but had always dreamed of doing so.

I decided that this would be my recovery, if I could complete a marathon (in my favorite city to boot!), than I could declare that I had recovered.

After more than a year of training that started with learning to walk. . .  to walking on a treadmill. . . to my first-half block run with my mom during which I felt like I had these duck feet slapping the ground with every step. . .  to running on a treadmill at rehab. . . to trying to run with a stroller. . . to a one-mile run, then 5 miles, then 10. . .  to running on the lakefront of Chicago. . . and sometimes having to come home on a bus sometimes in tears. . .

I was still struggling with long runs; so I re-energized my training by seeking sponsorships from friends and family benefiting the Preeclampsia Foundation. When I had the notion to turn my recovery effort into a fundraiser, I also hoped that it would have some impact beyond my life. . . that maybe I could help raise awareness about the risks, signs, and symptoms of preeclampsia and HELLP Syndrome.

That decision really made all the difference for me because as I promoted my effort, I was rewarded with the wonderfully inspiring notes, letters, and e-mails (many from some of you in this room) that truly kept me going.

Because, I can tell you, that up until the very day of that marathon, I wasn't sure that I would finish the race. . . but I did.

In all the months since my illness, I have learned a lot about what is not in What to Expect When You are Expecting and I want to help other families avoid a birth experience like mine, or even worse. You see, even as horrible as my experience was. . . I have to consider myself lucky because I am still here.

And, we are blessed with a beautiful daughter, Brooklyn.

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Posted On Sunday, July 22, 2012 By Amber


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