Posted On Thursday, February 24, 2011 by Johanne
Dear Preeclampsia Foundation and Community,
I signed up on your website back in September 2010, 2 months after my son Holdon passed away in the NICU after only 3 and half months of life. He was delivered via emergency C-section at 28 weeks when it was discovered that I had preeclampsia and was experiencing HELLP syndrome. It is now nearly 6 months later since I first signed up on this site and almost a year since our son was born and I am finally able to bring myself to tell our story.Â I am 34 years old (32 when I became pregnant). This was my first pregnancy, I am not overweight, have never had high blood pressure prior to the week I delivered, or any of the other predisposing factors for preeclampsia, and the full testing performed on me after I delivered confirmed this.Â We had no idea I was so sick and only found out because we had a scheduled appointment that day.
In order to tell our story, I have to go back to our 19th week...
We received a phone call from a genetic counselor provided as part of our prenatal care. She indicated that there was an abnormality with our second trimester prenatal screening blood work. My AFP levels were elevated. However, the amniocentesis came back normal and ruled out any genetic disorders so we worried a little less. We didn't know at the time that this was just the beginning of what was to be a very stressful pregnancy. Our care was very thorough. As a result of this abnormal prenatal screening, we began to see a Perinatologist along with our regular OB once a month. He performed full anatomy scans at every visit. At our next visit after the amnio, he identified that there may be a problem with our son's bowel. I was tested for toxoplasmosis twice but these tests came back normal too.Â Our 24 week check up with our regular OB, and subsequent visit with the Perinatologist were also normal. So we began to relax a little but then at 26 weeks I began to experience extreme upper gastric pain. I thought it was heartburn. I had never had heartburn before and mistook the symptoms for more than a week.Â At the beginning of my 27th week, it became so painful I could barely move. Sitting still or lying down was also extremely painful and I hadn't slept much in almost a week. I was also experiencing nausea and diarrhea. My husband suspected something wasn't right because he has had heartburn many times and never had the kind of pain I was describing.Â I had a scheduled appointment to see the Perinatologist the following week so instead I called my regular OB's office. They indicated that she was away and got me in to see a different doctor that same day. This was the Friday before I delivered. The nurses took my blood pressure and urine sample. Both were normal. Having only my description of the pain as a point of reference, the doctor believed it was heartburn too and sent me home with a prescription for anti-nausea medication. I took the medication for about a day with no improvement.
At this point I knew that the pain was not normal but I had no idea what it could be. I did not know this was a symptom of preeclampsia. I held out over the weekend and we saw our Perinatologist on Monday, April 5th. I mentioned the pain to him. He too didn't think anything of it at first. He identified another problem. The placenta wasn't providing enough oxygenated blood to our son and he had not grown in 4 weeks. After identifying this, I had a non-stress test done and the first shot of betamethasone, and we were sent over to a different clinic to see another Perinatologist the next day because that office is connected to a hospital with a level 3 NICU. At this point they were being precautionary due to the problem with the placenta and our baby's growth restriction. They still did not know I had preeclampsia.Â It was only after reviewing my vitals and discovering that the proteins in my urine were elevated on the 5th and had gone up another point on the 6th along with very high blood pressure readings, that they realized I was in trouble. From that point everything happened so fast. We were sent for stat blood work and ushered to the connecting hospital to labor and delivery. From there they indicated I had HELLP syndrome and had to deliver immediately.Â Our son was about to be delivered at 28 weeks but only measuring 24 weeks and we didn't even have time for the second shot of betamethasone. Our son, Holdon was born on April 6, 2010, weighing only 1lb 8oz.
Upon delivery, the doctors also discovered that there was indeed a problem with Holdon's small intestine as our Perinatologist had suspected. Holdon had a perforation and as a result had to have surgery the day after he was born and the surgeons had to remove 75% of his small intestine. Our beautiful brave little angel fought for 3 1/2 months in the NICU but in the end his tiny underdeveloped lungs and short gut syndrome were too much for him. He could notÂ absorb nutrients properly so his lungs couldn't develop and eventually he succumbed to infection. On July 20th 2010, we made the decision no parent should ever have to make. We were told there was nothing more the doctors could do for him. He was taken off the breathing tube and died in my arms a few minutes later.
We were told that the problem with his small intestine was unrelated to the complications of the preeclampsia. Apparently this kind of complication with the intestine is extremely rare and just happens sometimes. How is it possible that we would have 2 very rare conditions in the same pregnancy? We were also told the problem with the placenta may have resulted from the preeclampsia or the preeclampsia may have been caused by the problem with the placenta. These are a lot of presumptions but no real answers. We'll never know for certain why this happened to us and have to try and accept this and continue to live our lives. However, a day doesn't go by that I don't think about Holdon and about everything that happened and I feel a lot of anger that I didn't know what was happening to me and had very little warning before I was rushed into delivery at 28 weeks.
As we approach our son's birthday, we also approach the one year time frame we were given to start trying to become pregnant again. I have been told that I am now flagged as high-risk. I do not have any predisposing factors so the doctors cannot do anything preventative but I am told I will be monitored even more closely than I was before. This gives me some reassurance but I cannot describe the fear that I have of this happening again. I was being monitored very closely the last time and we still had no warning. How do I know for sure this will not happen again? I don't .
I understand that there is research underway to develop a test that will indicated a definitive yes or no as to whether a pregnant woman will get this disorder or not. I think this is amazing and could help prepare expecting mothers better for the potential risks and take the necessary precautions. I think information is key in better preparing expecting parents for this possible risk. There needs to be more information and education about Preeclampsia supplied to expecting parents as a whole. I read 4 different prenatal books during my pregnancy and there were only small blurbs of information about Preeclampsia in all of them. I had none of the symptoms they described so I didn't think it was something I had to worry about.
Thank you to the founders of this organization for providing a forum for me to share our story. I think the work you are doing is so important.
Johanne and Arun Regunathan
our beloved angel Holdon