HELLP syndrome and why I am NICU mom

by | Oct 9, 2020

The prospect of having to spend any time in the NICU is a scary one. Carey Haupt writes about her experience.

As a first-time mom, I had never heard about Hellp Syndrome, and I had no idea that it would make such a profound impact on my life. So, if you are like I was, HELLP syndrome is a rare, but serious condition. It can happen during pregnancy or shortly thereafter.

HELLP is an acronym that stands for the different conditions that can occur: Hemolysis: This is the breakdown of red blood cells. This impacts your body’s ability to carry oxygen from your lungs to your body. Elevated Liver Enzymes: When levels are high, it could mean there’s a problem with your liver. Low Platelet Count: Platelets help your blood clot.

Any of these can be serious but with Hellp you can have a combination of them all.

My story started while I was on holiday. We decided that we would have a special holiday before our baby was born. I was 32 weeks and feeling good. Towards the middle of the holiday I started to retain a lot of water, which I thought was normal, but then my urine changed colour and I was not feeling so well anymore. We decided to come home a day early, and little did I know that decision saved my life. I was not myself: I slept the entire trip and I felt like there was something wrong. I was not overly concerned, because I had been checked the day before we left by my gynae and everything looked good. However, now something told me I should just check, I felt an urgency. I asked my mom to take me to the hospital while my hubby unpacked the car. I just wanted to make sure, still not believing fully that something was wrong.

The nursing staff at the maternity ward were not happy to see me, and did not really want to do a urine test, but something in me insisted. Out of protest they phoned my doctor to let him know that he had a “difficult” patient. He asked them to do a full blood count because I had been near the Kruger Park and he was worried that I might have picked up malaria. I remember waiting for my results in the coffee shop and saying to my mom: “I really hope that something is wrong with me, otherwise it was all in my head.”

As it turned out, I was extremely sick. In fact, I needed to deliver my baby ASAP, not due to malaria, but because I had developed HELLP syndrome. I had no idea what it was only that my gynae had come to the coffee shop to fetch me with a bed, and said that my husband had 20 minutes to get to the hospital.

Fast forward to two hours later, and I was in the recovery room, totally confused, not remembering what had happened. I was not well enough to be awake while giving birth, so I had to have a Caesar and be put under for the birth. I didn’t see my son being born, which is something I had to come to terms with, as the birth was nowhere near what I wanted. I was suddenly a mom of a 33 week, 1.78kg little boy. It was too soon. My husband was ecstatic, and I was numb. I was so worried for my son, who I had not seen yet, and the pain was unbearable. My emotions and understanding of what had happened were not at all computing. I was kept in ICU for two exceptionally long days and nights. I looked as if I had been beaten: my back was black and blue. This was due to my low platelet levels and internal haemorrhaging. The doctors were amazed at how quickly I recovered and by day three, I was discharged to maternity.

I focused on expressing my breast milk and sending it to my son. It was exceedingly difficult to connect with him because I was not able to see him until I was well enough to leave ICU. He was only in NICU for three weeks, but they were the longest three weeks I had lived though. I am incredibly lucky that my gynae acted so quickly and that I did not have any of the more serious complications that can occur with HELLP syndrome, including seizure, stroke, liver rupture or placental abruption.

There may be a link between HELLP syndrome, and pre-eclampsia and eclampsia. Pre-eclampsia is when a pregnant woman has high blood pressure and damage to other organs such as her liver and kidneys. It usually starts after 20 weeks of pregnancy. Eclampsia is a more severe form of preeclampsia that includes seizures.

Most women tend to have higher blood pressure before developing Hellp syndrome, but a few, like me, can develop it with normal blood pressure. The symptoms can occur very quickly and include fatigue, blurred vision, sudden weight gain, swelling, especially in the face and hands, headache, nausea or vomiting, seizures, pain in the upper right part of your belly and nosebleed or bleeding that doesn’t stop as quickly as usual.

The main treatment for HELLP syndrome is to give birth as soon as possible, which normally means having a baby born prematurely. Sometimes your doctor can monitor you, which will give you and your baby more time. They are likely to give you corticosteroids to help your baby’s lungs develop. This is not a birth that any parent would choose for themselves, but from this experience I have learnt how strong my body really is, how quickly I recovered and how wonderful it was to be a mom. I also learnt about the inside of a NICU and all the hard work that goes into being a NICU parent.

My son’s birth ultimately made me realise how much support mothers need, and is the reason I became a lactation consultant and started importing breast pumps.