Wednesday, October 15, 2008

Pre-Eclampsia/HELLP Syndrome Story

I was 23 when my husband and I found out we were pregnant in July of 2004. We were very excited when we found out but also at the same time extremely nervous. We had been pregnant earlier that year and had loss the baby to a miscarriage at 8 weeks, not finding out until 12 weeks that the babies’ heart stopped beating at 8 weeks. Needless to say, we kept very quiet about this pregnancy, agreeing not to tell anyone until after our first appointment at 8 weeks. We had gone to our first doctor’s appt and everything seemed to be great, we even were able to hear the babies’ heart beat, which was a huge sigh of relief. We also got to have an ultra sound and we saw the heart beating. It was amazing. They said the baby was the size of a peanut. I was considered high-risk due to the miscarriage so they would need to follow my charts closely.

I had a healthy pregnancy, even up through the second ultra-sound at 18 weeks. It was a level II ultrasound due to me being high risk. The baby was growing right on schedule and that is when we found out it was a girl. They couldn’t guarantee us of course, but they were 99% positive.

It wasn’t until I was 27 weeks that things started to go down hill. For 27 weeks, I had a very healthy, normal pregnancy. I had gone to all my appointments with everything turning out great. I had no high blood pressure (I never have in my entire life), no protein in the urine, and amazingly enough, not even any aches or pains. The worst thing I had at that point was horrible nightmares. But those eventually subsided. (Pic to the right: 2 weeks before delivering Kayla. 27 weeks pregnant)

At 27 weeks, about 1 week before Christmas, I started to swell like a balloon. I remember it started with my legs. I felt like my legs tripled in size. I could not fit into any of my pants. When I bent my legs it was painful. It felt like pins and needles. Then my hands started to swell. My husband and I were at the mall Christmas shopping and I remember looking down at my hands and they were purple and swollen. I could not bend my fingers. The next thing to swell was the worst. It was my ankles. They eventually got so bad I could not fit into any of my shoes. That is when I realized something was terribly wrong. I called my doctor and told her about the swelling and turning purple. She asked if I had any headaches and I said “no”. She continued to say that it was completely normal and that I must have eaten food with a lot of salt. She also said that since I have no history of high blood pressure, to not worry. I wasn’t really comfortable with what she said but figured I would try what she said and keep my feet propped up and drink lots of water. I gave it about 1 week and the swelling just got worse. I called the Dr again and she said the same thing ”there is nothing to worry about.” But things just kept getting worse. There was one night my husband and I had gone out to dinner. That morning around 3am, I woke up suddenly and felt very weak and shaky. I was sitting on the floor in my bathroom just shaking uncontrollably, my entire body was just jolting (little did I know at the time that I was having convolutions form the onset of eclampsia). I felt no pain but had lost all control of myself, not being able to stop the shaking. After about 2 mins, it stopped and I started to vomit profusely. Throughout the entire pregnancy, that is the only time I was vomiting sick. I knew something was wrong with me, it just wasn’t normal what was happening to me.

My next appointment was scheduled for Jan 3rd, a Monday. The night before I was sitting down with my feet propped up when I realized I lost all feeling from my ankles down. My toes turned dark purple and were cold as ice. I told my husband I thought something was terribly wrong, I just didn’t feel right. I managed to make it through the night and to my appt the next morning.

When I walked in to the room for my exam, the nurse looked at me and asked if I was ok? My entire body, especially my from my chest up, were bright red and blotchy. My face was extremely swollen and I had the cold sweats. When they took my weight, I had gained 40lbs in 2 weeks (all of it being fluid). Up to that point I had only gained about 8 lbs. She took my blood pressure immediately and it was 181/160 (FYI – normal is 120/80). She made my lye down on my side right away and went to get the doctor immediately. The doctor came in and made me take a urine test to check for protein. It ended up I did have protein in my urine...she told me that she was almost positive that I had pre-eclampsia. I knew a little about the disease from what I read but not that much. I knew the symptoms but when I read them, I still hadn’t known that I had developed a lot of them, such as the high BP and protein. Plus, it was such a severe disease I don’t think the thought ever crossed my mind that “I” could have something like that.

They brought a wheel chair in for me and rushed me immediately up to the high-risk maternity ward. They told me that they would need to hook me up to an IV with magnesium and fluids and put the heart Doppler on me for the babies heart beat, and they would need to just watch me over night to see if they could get my BP to come down.

At that point, when they first admitted me, I was still able to get up and go to the bathroom on my own and I could still fend for myself. I just remember how I couldn’t believe this was happening. I didn’t think of it to be as severe as it ended up being. I remember having the IV, which they tried in 3 different spots before they finally got one in and having the fetal Doppler strapped to my belly. My face and my neck were “one”, I was so swollen. I also could not bend my fingers or barely move my legs, they were so stiff from being swollen and having so much fluid in them.

Over night, I had gotten a whole lot worse. I was still in Intensive Care. Still in the same room due to the hospital having all their ICU beds filled. I had nurses in my room at all times. Even with all the magnesium they had me own and meds, my blood pressure was uncontrollable. They had me on about 3 pills an hour, at least, every hour. I became immobile over night, not being able to move or do much on my own. They had to put a catheter in and keep pumping magnesium into me to keep me from having a stroke. My blood pressure was high enough that I was risking having a stroke and going into a seizures, putting me in a coma. The magnesium made my hot from the inside out, I felt like my blood was boiling. You become very delirious and feel unconscious. (Pic to the right: the day they admitted me. I gained 40lbs in fluid and you could not tell I had a neck, my head and neck were were from being so swollen. I could not bend my fingers and could barely move on my own from the swelling)

By Tuesday, they were running out of options to try and control my BP. They called my family doctor in to see if he had any suggestions. My doctors had stated that they have never had to deal with a case as severe as mine and they were not sure how to handle it. On Tuesday morning, they gave me morphine, in addition to the magnesium, in my IV and I must have had a side effect, I lost my sight. My entire body felt like it was on fire and my eyes burned and I screamed and cried in pain. They had to shut off all the lights in the entire section of the maternity ward for about 5 mins until the pain went away on its own and I regained my eyesight. They said that was a normal reaction from this drug.

In addition to all of the meds every hour, they took about 12 vials of blood every 6 hours, sometimes more often than that. I had bruises on the insides of my arms for weeks after. Eventually, my veins were so bruised in my arms; they started having to take blood from the tops of my hands. Same with the IV’s. They had to move the IV every 3 days. After all was said and done, my arms and hands were black and blue and my veins became hard from all the blood drawn. It was so painful for weeks after I had to have ice on them to relieve the pain.

On Tuesday night, I don’t remember much. I remember having a room full of visitors but I couldn’t “see” whom. I pretty much just heard their voices but couldn’t make out much of what they were saying. The one thing I will always remember is my sister in law standing at the end of my bed just staring in horror at me and my mother in law telling her that it was OK, even though I did not look like myself it was still me and to not be scared to come close to me. I also remember my sister sitting in the room with me and I couldn’t talk. I tried to get words out but just couldn’t, I couldn’t even lift my hand up. All I remember from that night is me mumbling over and over to her, “I feel like death”. I felt like I was “not really there” I felt myself slipping away. Later I came to find out that I almost did. My doctors and nurses told me later on that they did not believe I was going to “make it”. And how true it felt to me that night. I felt nothing that night. I had no feeling and no thoughts. I felt numb. I made it through the night, with my husband watching over me constantly. Every time I would even lift a finger it was like he knew...he would wake up to check on me.

On Wed morning, Jan 5th, my doctor came in and said that from the blood test results they had from earlier that morning, it seemed as though my kidneys were shutting down. They told me that there was no time to wait to deliver the baby that they would have to do an emergency C-Section at 12:30pm. They told me this only an hour or so before they were going to perform the C-Section. Their original goal on Monday night was to try and get my BP under control and keep me admitted in the hospital until I reached 32 weeks at least before delivery. Unfortunately, I had become so severe that that was no longer an option. They told me that the baby was not in any danger but because my body was shutting down, and I was risking death myself because of that, in order to save the baby they would have to deliver her.

With the news of me delivering coming so suddenly, I had no time to actually absorb what was happening. I just started to cry, in confusion and mostly for being scared, not so much for myself but for the baby. My husband held up pretty well (hiding it pretty well I should say) until he had to call our family and best friends to come to the hospital. It hit him like a freight train. He now had to fear for the safe delivery his daughter along with hoping his wife pulls through the delivery.

They told us that the baby had better changes being a girl because premature girls do better than preemie boys. They also said that she had passed the most dangerous point of 28 weeks (she was 29 weeks) and that was an advantage. They had started me on steroids the night before to build the babies lungs up quickly, just in case there was that chance of having to deliver. It was suppose to be 2 doses total, 1 every 12 hours. I got the full 1st dose but I had to deliver before the full 2nd dose had time to kick in.

They rolled me into the operating room to start the C-Section. They said it would take approx 1 hour to complete the surgery. I was shaking uncontrollably sitting on the table. I had two nurses, 1 on each side of me, holding my arms to try and keep my still so they could administer the epidural. They had to give me 2 shots of it for it to work. The next thing I knew I was laying flat on the operating table and my husband had come in to sit beside me through the surgery. I did not feel any pain but the one time I started to cry was when they were pulling her from me.I remember just being tugged really hard and my body being yanked at. Finally, they delivered her. I heard a little cry and that was it. I did not get to even see her. They rushed her right away to NICU. I don’t remember much after the surgery for about the next 2 days or so. I was still in ICU on all the same meds and magnesium and morphine. I started to get very nauseous from the morphine so they gave me something else in my IV to counter act with it. I did not get to see my little girl for 2 days. Even then, they had to roll me down to NICU in my bed and I couldn’t even reach out to her to touch her. It wasn’t until the following day I was able to go down in a wheel chair to actually touch her through the isolette. She was doing very well¼she was 2lbs 4oz and 14 ½ long. We named her Kayla McKenzie. (Kayla was in NICU for a total of 48 days. She came home on February 22nd and weighed 4lbs 6oz). (Pic above: Kayla's birth pic in her Isolette in NICU) (Pic to the left: My 1st time holding Kayla in NICU. This was a few days after I delivered her)

As for myself, I wasn’t doing so well. According to my doctor, after delivery, your body is supposed to rid of the pre-eclampsia. Mine decided to do the opposite, it got worse. I developed HELLP disease in addition to the severe pre-eclampsia. My kidneys were still shutting down and getting worse. My liver was also on the verge of failure. My platelets had dropped extremely low and were at a very dangerous level risking liver failure. My blood pressure continues to stay extremely high. I still retained all my fluid and swollenness also. My body was failing internally.

Over the next week and a half, the had tried a number of diuretics to rid my body of the fluid (all 40 lbs of it), along with about 4-5 pills every hour, approx 12 vials of blood now every 3-4 hours, magnesium (to keep me from having a stoke still), morphine, and fluids in my IV, pain killers (perkaset), sleep aides (ambien), the catheter and leg balloons on both legs to keep my legs from developing blood clots. My blood pressure was still dangerously high 160/120’s¼I had a series of ultrasounds on my abdomen, heart and lungs due to the organ failure I was having. They started me on meds for my kidney and liver¼everyday my palettes started to get a little better. Just as that was getting better, I developed a UTI. I was also seen by a cardiologist 2x a day to keep an eye on my heart because of the risk of a stroke.

Eventually the diuretics did their job. About 1 week after I delivered Kayla, I lost all 40 lbs of fluid. I was back to looking like a “person” again. I could bend my limbs somewhat. It took my about 3 days to be able to walk again. I felt helpless. I had to be pushed in a wheel chair because I had no strength. I could not even take a shower on my own. I needed help just to sit in the shower. My platelets started to come up and my body was starting to heal itself and recover. Towards the end of the 2nd week in the hospital, all the doctors combined were able to come up with a reasonable amt of pills to send me home on to control my blood pressure. They got it down to 3 different pills for a total of 20 pills in a 24-hrs period. In addition to that, I had to keep record of my blood pressure every 3 hrs and I had a follow up with my family doctor every 2 weeks.

Today, Kayla is a healthy, active 31/2 year. She is absolutely beautiful with her blond hair and her big blue eyes and her constant smile. The most of her medical issues are they discovered she has 2 holes in heart, none of which are going to affect her. She had some problems with her retinas around 2 months of age, they were not developing correctly and they were bleeding and scarring. Since then, they have healed themselves and they do not expect any problems. Fortunately, she had no major medical problems and continues to grow and do well. We tell her all the time that she is our “miracle baby.

Even after this terrible experience, my husband and I decided to try for another baby. Unfortunately we lost our son, Landon Michael, at 22 weeks of pregnancy, in July 2006, due to his kidneys never developing. We fought for him to survive, looking for any option possible to make the pregnancy a successful one, even seeking a 2nd opinion for CHOP in Philadelphia but unfortunately they gave us a 0% chance of him surviving to delivery and told me that if I decided to carry the pregnancy through, I had almost a 100% chance of developing Pre-eclampsia and HELLP syndrome again and this time not surviving it. Since the loss of our son, we have had another baby girl, Madison Elizabeth, born Feb 12th, 2008. She too was born early at 35 weeks due to complications with myself. I was diagnosed with a blood clot in my lung at 17 weeks pregnant and was hospitalized over 20 times due to complications throughout the pregnancy. I was on large doses of Heparin Injections 3x a day throughout the remainder of my pregnancy, accompanied by blood work 4x a week and Dr. appts once a week (eventually putting me on Coumadin after delivery for another 4 months.) In addition to the Heparin injections, I was on over 18 pills a day throughout the pregnancy. I also started to experience rising blood pressure at 32 weeks, with my doctors fearing once again the onset of pre-eclampsia. They decided to deliver her early to be on the safe side. Today we have 2 beautiful little girls that we treasure and adore and feel they are a true gift from God.



jhkit said...

Wow, your story sounds a lot like mine! I had my baby in 1991! I was lucky enough to almost make it full term though. Nearly died afterwards from the HELLP. I didn't know there was an organization for this!

Stacey said...

And I thought I was the only one out there who experienced this HELLP syndrome. Thanks for your story!!! I delivered my son at 35 weeks...thank god I made it that far. He was a whooping 6.00 lbs at birth so he was just fine being born early. I was the one who was a mess. No one can understand what that magnesium does to you unless you have been there. I was like you with the sensitivity to light and being unable to see. I knew instinctively I was dying that summer day in 2004. Of course the doctor's don't tell you that at the time. My kidney's, liver and finally my lungs shut down before I had an emergency c-section. What bothered me most about your story is that your symptoms didn't go away after delivering. That is quite unusual and scary. I am happy that you and you daughter are fine now. Can't help wondering if like me you didn't try for anymore kids? Since I almost died havin my son I always felt it would be irresponsible to have any more. Just in case the HELLP came back and i wasn't that lucky again. Thanks again for your story !