Some Background Info on the beginning of my journey

THIS IS THE STORY I HAVE ON THE PREECLAMPSIA.ORG WEBSITE (WHICH IS A GREAT RESOURCE FOR WOMAN LIKE ME WHO HAVE SUFFERED HELLP OR PREECLAMPSIA. THEY COLLECT STORIES GOOD OR BAD TO GIVE AS MUCH INFO AS POSSIBLE. I THOUGHT IT MIGHT BE A GOOD THING TO MENTION MY PAST TO BRING EVERYONE UP TO SPEED FOR THOSE OF YOU THAT DON'T PERSONALLY KNOW ME.


In the spring of 2008, our family was undergoing so many changes. After six years of marriage, my husband Matt and I were finally expecting our first child at the end of April, 2008. Additionally, my husband had been offered a job promotion so we were preparing for a move from Connecticut to Wisconsin. My husband was in Milwaukee working while I was finishing up in Connecticut. My plan was to pack up our house and move into our new house before the baby was born, so we would have as little interruption and stress as possible. Little did I know that it would not be possible with the events that were about to happen.

In the first week of April, my house in CT was being packed up by the movers. My husband had some work obligations in WI, but me being a very independent sort of woman thought I could supervise them by myself as I had on many other moves before. I wasn’t feeling that great that week, but no big red flags or alerts or anything to cause concern and the pregnancy had otherwise been uncomplicated. On Thursday, the movers finished packing our house and set off with all of our stuff to WI. I was going to my last appointment on Friday morning at my CT OB before heading to WI on Saturday. I was feeling a little off, (but nothing to make me so worried) so my mother in law drove down from NY just to make sure I was ok. When we got to the doctor’s appointment, I mentioned not feeling that great that week to the doctor which set her off on a series of questions. At that point, they took my blood pressure, which was sky-rocketing. The doctor was concerned so I was instructed to go across the street to the hospital for some tests.

At that point, I was feeling scared and alone. They did some initial testing and told me in the nurse’s words “You are your baby are very sick”. I must have heard this continuously throughout the morning and early afternoon. They told me I had HELLP syndrome. As a stream of doctors and nurses came in explaining everything to me, I realized the gravity of the situation. My kidneys and liver stopped functioning, my blood platelet count was low and I was given medication to help prevent me from having seizures. Then a flurry of activity began. I called my husband in WI and although I didn’t want to scare him, told him he needed to get on an airplane right away. He didn’t have time to go back to his corporate housing to get anything so he got on an airplane with no luggage, got stopped by security for booking a last minute ticket and having no luggage, all the time wondering what sort of condition me and the baby would be in when he got to CT.

In the meantime, the doctors decided to induce but told me I could not have an epidural because my blood platelet counts were too low. As if the ordeal of a normal birth was not scary enough, now I was to have this baby by myself with no husband in sight and with no epidural. My mother in law truly did not know what she got herself into at that point (being the mother of three boys). Well the baby must have sensed my panic because her heart started racing, which they had been monitoring. So on top of every OB in the hospital stopping in my room, I now had pediatric cardiologists streaming in the room trying to explain what could happen once baby was born. Some point shortly after that, it became clear that they had to do an emergency C-section. At this point, my husband is in mid-air on a flight and has no idea what he is going to come into.

At the end of the day, despite everything we had to go through, we were one of the lucky ones. My husband arrived at the hospital as I was coming out of surgery and was in the room when I woke up. My daughter was born 5 weeks and 6 days prematurely. She stayed in the NIC unit for 2 days for them to monitor her heart. I was struggling with everything as pediatric cardiologists came in to discuss my daughter and the possibilities. They were at best concerned about the heart racing in the womb and the effects of HELLP, as well as the small hole in her heart. However, all they ended up doing was monitoring her and luckily she had no further complications. The hole closed on its own in a few weeks and she has turned out to be absolutely perfect.

I was another story and from what I understand I was very lucky. I could not even get out of bed for 2 days to go to the NIC unit to see my daughter, Olivia. They did let her visit me in my room for limited periods of time, but it took every bit of energy I had to hold her. It took sheer determination to try to use the breast pump, which was important because of the immunity it helps provide the baby from sickness. The nurses thought I was crazy and taking on too much, but I knew I had to get moving and fighting it for me to get through this. Because of my weakness, low blood platelet counts and bruises all over my body, they decided to give me two blood transfusions. Remarkably once they did this, my body began to heal. So as all of our belongings were in route to our new house in Milwaukee with no one there to receive them, we didn’t worry about it. Instead all we could do was look at my daughter in awe and think how lucky we were. (While my daughter was an 8 lb 8 ounce preemie – I could only imagine how big she would have been at full term - there were so many sick little ones in the NIC unit next to her that it makes you realize how lucky you really are that your daughter is perfect after all of these complications.) The doctors and nurses who actually understood this disease saved mine and Olivia’s lives. Had I not had a doctor who wanted to make sure everything was ok before sending me home, I would have been on my way driving to Wisconsin on Saturday and the end result could have been much different. I look back on that day and realize I am extremely blessed.

Although everything turned out ok with us, it is not something that has just passed or a disease that has been cured. I have moved to yet another state and every time I have a new doctor, I try to explain HELLP, but you would be surprised that although many have heard of it they do not understand what it is. I have had all sorts of different information about getting pregnant again. Some doctors tell me I have a 25% chance or higher of having HELLP or preeclampsia with the next pregnancy. Others say that my chances of it are slight since HELLP seems to come on later in the subsequent pregnancies and the first time around only came at 35 weeks. No one in either of our families had ever had any pregnancy complications. In fact, not one of our mothers, grandmothers, sisters, or aunts had ever even had a C-section. Like many others with HELLP, I have no idea if it is something genetically predisposed or what causes it and that is what is scariest about the disease.

Nevertheless, we did decide to try to get pregnant again and in late 2008 we succeeded. Unfortunately, in February 2009 we had a miscarriage in the 16th week of pregnancy. In January 2010, we had another miscarriage. The doctors say they do not believe HELLP played a role, but they are not sure and I have to wonder. Today, I am currently six weeks pregnant and cautiously optimistic of a successful outcome.