Do you know about HELLP Syndrome? No, that is not a misspelling. HELLP is thought to be a variant of pre-eclampsia, although it may be entirely different. As teachers, we get students with a varied set of background experiences and health conditions. We need to be aware of the issues some families have and may have experienced. I have experienced this syndrome personally as I had HELLP Syndrome and a birthing emergency.
This is a Q and A Blog post that explains the experience. This was written when my daughter was two years old, and now she is almost three. I wasn’t a blogger at that time but I am now!
Question: I understand your child was born prematurely when you had HELLP Syndrome. What is your experience with HELLP Syndrome?
Answer: It started out in the middle of the night, upon the start of my third trimester; that night I felt a mild back pain that was uncomfortable enough to prevent me from falling asleep. Then, about half an hour later, out of nowhere, I felt another pain, much more intense right below my rib cage and that quickly turned into unbearable agony. I don’t know how else to describe it but to say, it felt like a truck was parked on my chest. It was so painful to breathe that it felt as if I was only getting 10% of oxygen. It was the worst pain ever going across my abdomen, and not being able to breathe properly on top of that was excruciating and torturous.
Not everyone has the same symptoms. Some people only have mild discomfort in their upper right abdomen. I had no idea what was happening to me, my husband and I just rushed to the nearest hospital, and luckily that hospital had a level III NICU. HELLP syndrome is a variant of pre-eclampsia, and HELLP is often misdiagnosed. In my case, one of the nurses initially thought I had a gall bladder infection, but the pain came from my liver expanding. After running blood tests, the doctor announced that I had pre-eclampsia/HELLP and that unless my symptoms improved, we would have to deliver the baby soon. My blood pressure was skyrocketing to the point where seizures were likely to strike. I had never heard of HELLP before.
Thankfully, several doctors walked in and reassured me that it was not something that I had done and not to feel guilty. They also gave me 2 shots of steroids in order to boost lung development of my unborn baby. Our baby girl was born via C-section, about 9 hours after checking in to the hospital, weighing only 1 lb 13 oz, at one day shy of 27 weeks gestation. Picture of our premature daughter immediately after birth. Preemies often look red because their bodies are suddenly deprived of oxygen.
Question: Medically, exactly what is HELLP Syndrome? Answer:occurs in about 1 to 2 out of 1,000 pregnancies. Most often HELLP develops before the pregnancy is 37 weeks along. Sometimes it develops in the week after the baby is born. Liver enzymes may be high. Platelet counts may be low. A CT scan may show bleeding into the liver. *NOTE: This is not to be interpreted as medical advice and is just part of what she learned during this experience.
Question: You mentioned the experience was like being on a roller coaster. Could you please explain a little about the emotions you experienced?
Answer: First, everything happens so fast it is difficult to have any time to think. The progress was very slow and everything seemed to be so slow even her stay in the NICU: days feel like weeks and weeks feel like months. The emotional roller coaster is really tied to the idea that your baby can be doing well for a few days, we are taking baby steps forward, and all of a sudden something happens and we are taken 10 steps back. It is very frustrating to constantly be waiting for everything to improve. Not everything improves at the same pace. Some babies struggle with different things. They are all on their own schedule. The introduction to eating had to be done very slowly and very carefully because her stomach was not ready to digest any food. There was the constant worry of NEC (Necrotizing Enterocolitis) as very low birth weight babies are at a high risk of developing NEC especially after the first feeding commences. NEC is very serious and can be fatal. It is the most common and serious intestinal disease among preemies, and could possibly cause a life-threatening infection. Thankfully our daughter did not catch NEC. Every day I would call the hospital to check her weight gain (sometimes she would lose) and ask about how she was doing while I was not with her. Parents of preemie get extremely excited over the smallest things or progress with their preemies. It can be that the baby pooped on her own or that she did not have a stopped breathing episode that day. The weight gain was difficult and very slow. It was 1 to 3 oz per day on average. 3 oz was rare and was usually likely to be water. They also gave her treatment for that.
Question: What were the things that helped you during this time?
Answer: The NICU nurses were wonderful. Deb was the primary nurse, and Stephanie, Irene, Pattie, and Diane all knew so much and helped so much. Nice messages from people, visits, and prayers all helped. We set up a Caring Bridge site, and that was very positive. I felt like I was pumping and going to the hospital around the clock so that I didn’t feel like I had time to take a shower. The Caring Bridge site helped me keep everyone up to date at once as I didn’t have time to call everyone. Reading blogs about premature babies helped, although sometimes they scared me. My sister made a scrapbook from day one through the 81 days in NICU, and that is wonderful to have now.
Question: What was especially difficult?
Answer: Preemies go through so much, they have to learn to breathe, digest food, maintain a regular heartbeat and much more. She was given a suppository every few days to help her digestion. She was initially on TPN (total parenteral nutrition) which included caffeine and lipids and other nutrients. After a while they ran out of places to poke her with a new IV; so they inserted a PICC line (Peripherally Inserted Central Catheter) which is a long catheter running from her wrist all the way to the top of her arm and can stay in for up to one month. It was very hard to see her so frail and little and see all the equipment, tubes, and wires hooked up to her tiny body.
It was hard not knowing what would happen with her and worrying about her outcome, and all of the possible long term issues she would face. It was very tough to see her fighting for her life, day after day while learning to breathe on her own, gain weight and become stronger. It was very difficult to be around the monitors go off every so often, all of that was very scary, especially for first-time parents. Also, we wanted her to be home for Christmas, and that was not possible. We were able to get a photo with Santa, although it was taken in the hospital. It was nice they did that.
Question: How does the NICU staff decide to send a premature baby home?
Answer: Our child was able to be home for New Year’s Eve, and we were grateful for that. Before a child can be sent home from NICU, there must be no desaturation (drop in oxygen level below 80%) or bradycardia (drop in heart rate) episodes for a week, and no other complications such as infections. If there is one such episode, then the date is delayed another week. The doctors at our hospital wanted us to feel confident the child would be fine without any monitor at home. They have a car seat test before sending the child home, as well. They put the child in the car seat for 90 minutes hooked up to machines to see if they have any desat or Brady. If they don’t for 90 minutes, then they pass! There are several other tests that have to be passed before the child is released from NICU to home care. Luckily our daughter did not have major complications. She had 2 blood transfusions and 1 minor infection. Her brain scans showed no bleeding and the eye exam came back with no ROP, which is a GREAT outcome.
Question: How is she doing now?
Answer: Our daughter has been a healthy and happy little girl. She is now 2 and is smaller than her peers (in the 10 to 20th percentile range for height, weight, and head circumference) but one could not tell now that she was born so little. She is on track developmentally despite a normal delay which should be caught up within a year or so. We benefit from early intervention services which has been very helpful. She was extremely lucky given her prematurity and we could not have been prouder. When she was born, they told me how she was “feisty” that may have helped her during her NICU journey and I can say, it is still true today!! It never ceases to amaze me what love and technology can do!!
Thank you for reading, Morgan