The Loss of Our Beautiful Angel Holdon
In January 2010, I was 19 weeks pregnant and everything was perfect. I felt good, I had the best OB/GYN and excellent prenatal care, and getting pregnant was easy. We began trying in September 2009 and found out on October 16th 2009 that we were already pregnant. It seemed like everything was on track and all our dreams were coming true, but then I got a call that changed everything.
In my 19th week, we received a phone call from my doctor indicating that there was an abnormality with our second trimester prenatal screening blood work. My AFP (Alpha-Fetoprotein) levels were elevated. We met with the genetic counselor and were told it could be nothing but it was recommended that we have an amnio to rule out any genetic and neural tube abnormalities. We were unsure what to do because there’s a slight risk of miscarriage, between 1 in 300 and 1 in 500, with having an amnio. However, we were really worried and decided that we wanted to proceed so we would have the information. If there was nothing wrong, we would have peace of mind. If there was an abnormality, we wanted to be prepared for it in the event that we may have a special needs baby. 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 the abnormal prenatal screening blood work, 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 because there was some brightness in that area on the ultrasound. I was tested for toxoplasmosis twice but these tests came back normal too. There was no evidence of an infection that may have caused a problem with our baby’s intestine and at the time the Perinatologist indicated that it may just have been because I’m thin that the ultrasound showed up brighter than usual. Our 24 week check up with our regular OB, and following visit and ultrasounds with the Perinatologist, were also good so we tried to relax again. We went on vacation and tried to regain the excitement and positive attitude that we had before all this happened but then at 26 weeks I began to experience extreme upper abdominal pain. I thought it was heartburn. I had never had heartburn before and mistook the symptoms for more than a week. 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. My husband suspected something wasn’t right because he has had heartburn many times and never had the kind of pain I was describing. 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 3 days before I had my emergency c-section. 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 and HELLP Syndrome. I held out over the weekend and we saw our Perinatologist on Monday, April 5th at our scheduled visit. 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 much in the 4 weeks since our last scan. After identifying this, I had a non-stress test done and the first shot of betamethasone for lung development, just in case, because it was looking like we might end up delivering early. We had no idea how early it would be.
The next day we were sent to a different clinic to see another Perinatologist because that office is connected to a hospital with a higher-level 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 HELLP Syndrome and that I was so sick. 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 too. From that point everything happened so fast. In a blur, 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, a severe varient of preeclampsia.
I was told my life was at risk and I had to deliver immediately. Several doctors and neonatologists came in and talked to us. I don’t really remember what they said. All I was thinking in that moment was that our son was about to be delivered at 27 1/2 weeks while only measuring 24 weeks and we didn’t even have time for the second shot of betamethasone for his lung development. We barely had time to sign all the paperwork before I was wheeled into surgery. Our son, Holdon Fernand Regunathan, was born on April 6, 2010, weighing only 1lb, 8oz. I got a small glimpse of him and then he was placed in an incubator and rushed to the NICU.
Due to my illness, I was on 24 hour watch and magnesium IV therapy, and because of the magnesium treatment, I wasn’t allowed to leave my bed and go see him until the next day. Even then, they only let me out early because Holdon had to have surgery and I wouldn’t sign the approval documents until I got to see him. It turned out our Perinatologist was right and there was indeed something wrong with our son’s intestines as he suspected. He had a perforation and as a result had to have surgery at only 1 day old and the surgeons had to remove 75% of his small intestine. Our beautiful brave little angel fought for 3 ½ months in the NICU but in the end his tiny underdeveloped lungs and short gut syndrome were too much for him. He could not absorb nutrients properly so his lungs couldn’t develop. He never came off the breathing tube and eventually he succumbed to infection. As a result of sepsis his organs began to shut down and on July 14th 2010, we were told there was nothing more that could be done. On July 20th 2010, after struggling for days with the impossible decision no parent should ever have to make, our son Holdon 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 HELLP Syndrome. 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 complications in the same pregnancy? We were also told the problem with the placenta may have resulted from the HELLP Syndrome or the HELLP Syndrome 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 27 1/2 weeks.
Below is some information about HELLP Syndrome and a link to the Preeclampsia Foundation website. I strongly encourage anyone who is pregnant or trying to become pregnant to check out the foundation website. There is valuable information that may help save your life and the life of your baby. If I had this information before my first pregnancy, it may have saved my son’s life. There was nothing we could have done about his intestinal issue and he likely would have still been born early. However, if I had known what my symptoms were, I may have caught the preeclampsia earlier, before I became so sick. Thus, I may have been able to carry my son longer while giving him a better chance. The doctors may have been able to give me the second shot of betamethasone that may have helped his lungs develop a bit more and perhaps without all his lung issues, he would have survived. I’ll never know and it doesn’t change anything to wonder but at the very least, I hope my story can help prevent this from happening to others.
What is HELLP Syndrome?
HELLP Syndrome is a serious, life-threatening complication of pregnancy associated with preeclampsia.
HELLP syndrome stands for:
H – hemolysis, which is the breaking down of red blood cells
EL – elevated liver enzymes
LP – low platelet count
Symptoms of HELLP Syndrome:
- epigastric (abdominal) or substernal (chest) tenderness and right upper quadrant pain (from liver distention)
- nausea/vomiting/indigestion with pain after eating
- shoulder pain or pain when breathing deeply
- visual disturbances
Signs your doctor looks for:
- high blood pressure
- protein in the urine
For more information about Preeclampsia and HELLP Syndrome, please visit the Preeclampsia Foundation Website at www.preeclampsia.org
Please note – When I read about preeclampsia in the pregnancy literature during my first pregnancy, the symptoms were described as high blood pressure, severe swelling, headaches, and being at higher risk if you are overweight. I didn’t have these symptoms and I am not overweight so it didn’t even occur to me that this is what I had. The only symptom I had originally was the upper abdominal pain. On the day I delivered I also had elevated blood pressure and protein in my urine but these symptoms came on quickly and are things I didn’t know I had until I went to the doctor. So you can see how important it is to know all the symptoms as you may only have one but it might be enough to indicate that there is a serious problem.