Our Angel Holdon

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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)
  • headache
  • nausea/vomiting/indigestion with pain after eating
  • shoulder pain or pain when breathing deeply
  • bleeding
  • visual disturbances
  • swelling

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.

17 thoughts on “Our Angel Holdon

  1. I am so sorry for your loss, there are no words. We lost our son Rohen at 20 weeks, he was still born, placental issue for us too. I look forward to following you – looks like we are both around the same time in our current pregnancies now.

    1. I’m so very sorry to hear of your loss too. I just read your latest post and starting following you too! Our dates really are so close! Sending you a big virtual hug.

  2. Just came across your blog and felt compelled to comment. Not sure what I could possibly say that you haven’t already heard. That is beyond a nightmare. I cannot imagine what you and your husband went through during that time. I am going to send all of the positive energy, thoughts, and prayers that I can to little Holdon who is happy, healthy, and safe now, and to a healthy and complete pregnancy for you this time. Before each yoga class we set an intention so today mine will be positive energy to your pregnancy. (Hopefully that’s not creepy.) I’m glad you get to express yourself through your writing and putting pen to paper. It’s a simple gift to be an eloquent writer and to be able to express yourself with words, but it really works. Keep fighting the good fight and you aren’t alone. And your blog is helping others a lot, I’m sure.

    1. Thank you so much for your prayers and for the positive thoughts and energy through your yoga intention. I don’t think that’s weird at all. It means so much to me. I’m trying so hard to live in the present moment and not focus on the past and hopefully not relive what happened with Holdon. Knowing that so many are thinking about me and this new pregnancy and sending positive energy really helps! Sending light and positive energy back <3

  3. Wow, our stories sound similar. With my last pregnancy, I had severe preeclampsia and delivered our daughter stillborn at 24 weeks and she hadn’t grown in three weeks and was measuring at 20 weeks when I had her. She had reverse blood flow and only 3/4 of my placenta was not functioning. My AFP was a 7 with her and even though her anatomy scan found nothing physically wrong, my perinatologist discovered my uterine arteries were severly restricting blood flow. In addition, the whole preeclampsia thing- he predicted I was heading into severe.

    I had preeclampsia with my son but he was delivered at 32 weeks and that was 8 years ago.

    I only have one kidney and my husband and I are not trying again. Both of us are terrified about losing another baby, having organ failure, and the risk of preeclampsia being worse in subsequent pregnancies.

    We are still grieving our loss, but I am so torn about permanently stopping the ‘trying’ part. I know it is for the best. My mom had preeclampsia with me and weighed 1-lb. Genetically, I think I’m more prone to having preeclampsia again.

    1. I am so so very sorry to hear about your loss and for all you have been through. Our stories really are so similar. I constantly live in fear of it happening to me again too. My doctors told me it is very unlikely that I will have a re-occurrence. I had HELLP syndrome which they tell me doesn’t have as high of chance of happening in subsequent pregnancies, and I don’t have any predisposing factors for it nor does it run in my family, but they don’t really know why I got it so it’s hard to know for sure if I’ll get it again. It has taken us 4 years to have a pregnancy make it past the first trimester again so for the longest time, I have just been praying to have a successful pregnancy again, but now that we have made it to 20 weeks with this pregnancy, the fear of getting HELLP is beginning to really worry me again. After losing our son and having 4 miscarriages after him, I don’t think I will survive another loss at this stage. I think if it happens again, I won’t be able to keep trying again either. Thankfully, everything seems to be going well so far. We’ll see what happens in the coming weeks. Sending you a very warm hug and prayers for your little girl. She is with God now, and He is taking good care of both our angels. Hugs <3

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