Angela gave birth unexpectedly to son Max at just 26 weeks along with almost no warning at all. HELLP syndrome was behind her early birth, but she didn’t fit the profile. Luckily, her medical team took her concerns seriously and she and Max are here today. This is her story as told in her own words:
Little did I know that my Thanksgiving break from my last month of nursing school would be spent being admitted to the local hospital in Kenosha, WI. , St. Catherine’s, by my OB doctor on November 20, 2012 for what was suspected pre-eclampsia. I was 26 weeks along. Looking back, I recall that for a few days I wasn’t feeling well. Friday I had indigestion, so I thought. Saturday and Sunday I didn’t feel right, not much of an appetite and I told my family I felt nauseous. Monday, I would get hot on and off, and I thought I had heartburn.
I have never had heartburn before so I didn’t know what it was supposed to feel like. I told them what I did to try to relieve the pain, by taking Tums when it started at 7pm. I took a hot bath, consumed more Tums… and still I didn’t feel well. By 9pm I was taking ranitidine, the max strength that was on the sheet they gave me of approved meds in the beginning of my pregnancy. I waited for it to kick in and still it didn’t resolve the pain I had under my sternum. I took more Tums, another hot bath, and at 10:30pm was still in pain. I managed through it, and at 3:30 am when I was finally getting ready to go to the E.R. I fell asleep next to my 2-year-old out of pure exhaustion.
I woke up and went along with my day feeling okay. I went in at 1:30pm to see the doctors. The medical assistant took my urine, blood pressure and then rechecked my blood pressure. It was 160/118 with a 2+ of protein in my urine. Two or more bp’s of 140/90 with protein in the urine classify pre-Eclampsia as mild. Severe pre-Eclampsia is labeled as two bp’s of 160/110. She put me in a room and had me lay on my left side on the table while I waited another five minutes so she could re-check my bp.
Then, more alarmingly, the doctor came in and asked if I would drive across the street to the hospital because she wanted to monitor me since my bp was extremely high – even though I didn’t fit the classic pre-e profile of being a first time mom, or having a new dad, being in the third trimester, or having it before. Yes, I had stress from school, but I didn’t think it was anything more than minor. They asked if I was having headaches, or had changes with my vision. No. I would have never thought it was my blood pressure. I felt… not 100%, but I figured it was because of staying up studying and also taking care of the other children at home.
My husband left work to meet me as everything hit the fan really fast. He wondered what a pre-e diagnosis meant, and as I looked it up on Google in my cell phone, I couldn’t bring myself to tell him “it’s potentially fatal”. I just said it’s “not good” because I didn’t want to scare him. I was always very healthy; I’d get a cold now and then, but had no health problems, diseases, or disorders. Everything had been normal. We’d heard the heartbeat at our last office visit.
Pre-eclampsia causes thousands of women and babies to die or get very sick each year. It’s a life-threatening disorder that occurs only during pregnancy and the postpartum period. Preeclampsia and related disorders such as HELLP syndrome and eclampsia are most often characterized by a rapid rise in blood pressure that can lead to seizure, stroke, multiple organ failure, and the death of a mother and/or baby. HELLP syndrome happens to 0.2% of all pregnancies according to http://americanpregnancy.org/pregnancycomplications/hellpsyndrome.html.
Fast forward and the nursing staff was getting me settled in at the hospital. They were very calm and professional while taking my urine and checking vital signs as I waited for the doctor. The phlebotomist came to draw my blood. An ultrasound tech came in to check my gallbladder. I could hear my wonderful doctor outside my door telling the staff that I have always been healthy and have never had a blood pressure problem. As my doctors did many tests to rule out other conditions, they collected my urine for 24 hours.
- My AST was 49 and high (enzyme released into blood when the liver or heart are injured)
- ALT was 33 and normal (tests liver)
- Red blood cell count was 3.59 which were low. (Tests for anemia)
- Hemoglobin 11.8 low (protein that carries oxygen to organs & tissues, shows anemia if low)
- Hematocrit was 33.0 was low (proportion of total blood volume composed of red blood cells)
- Platelets were 104 which were low (measures how many platelets are in blood. helps to clot the blood)
- AST 45 high
- ALT 30 ok
- RBC count 3.44 low
- Hemoglobin 10.7 low
- Hematocrit 30.4 low
- Platelets 76 low, with no platelet clumping seen and confirmed with slide estimate.
The severity of HELLP syndrome is measured according to the blood platelet count of the mother and divided into three categories, according to a system termed “the Mississippi classification.”
- Class I (severe thrombocytopenia): platelets under 50,000/mm3.
- Class II (moderate thrombocytopenia): platelets between 50,000 and 100,000/mm3.
- Class III (AST > 40 IU/L, mild thrombocytopenia): platelets between 100,000 and 150,000/mm3. (http://www.preeclampsia.org/health-information/hellp-syndrome).
As time went on my hands and feet swelled and looked like sausages. I couldn’t move my wedding band and it hurt my feet to walk. At one point I know my bp was 240/180. My liver enzymes were high, and I had low platelets. Along with hemolysis, which is the breakdown of red blood cells, that was enough to indicate it might be HELLP syndrome. In the morning, the doctor came in and said they would be transferring me to Froedtert so I could be with specialists that know more about HELLP syndrome. And they had a Level III neonatal intensive care unit, just in case. She reiterated that I didn’t meet to typical case guidelines for this syndrome, and they were somewhat taken back by it all.
I was transferred to Froedtert on Wednesday, November 21, 2012 at noon by ambulance with a nurse by my side. I was given magnesium sulfate to reduce the risk of seizures from the severe pre-eclampsia. It made me feel like my whole body was on fire. I remember there were so many people there. There were two RNs waiting for me. People were drawing blood. Doctors were coming in. They said I might have to deliver. I cried while they told me staff members would come in to tell me what to expect with a preemie and if I had questions for them.
My husband finally arrived, and a neonatologist came in to explain what could happen, and how to prepare ourselves for the road ahead. A doctor came in to do an ultrasound of the baby. This showed absent end diastolic flow. This mean there was fetal vascular stress and placental insufficiency. We were told the baby wasn’t getting appropriate oxygen and nutrients. He was in breech footling position with feet point downward so a C-section was necessary. It was also better, since the stress of labor might not be well tolerated by a baby of 26 weeks gestation. And then like that, it was decided. I had to deliver to keep us both alive.
I called my mom and started crying, and she came right away to be with me. She had an idea of what to expect because she had me 3 months early. Not that knowing what to expect helped. We weren’t ready at home with car seats and clothes. Our son wasn’t supposed to come into the world until February 2013, not November 2012.
But fate had other plans. The best thing to do was deliver the baby early, as my placenta was deteriorating because my blood supply was being shunted to my vital organs, and the uterus is not one of them. There is no known origin for HELLP syndrome. Nothing I did caused this. I did everything right and yet this situation was not right. This wasn’t how it was supposed to be. I wouldn’t get to grow a large tummy to cuddle and caress, I wouldn’t get to let others feel kicks and punches, I wouldn’t get to do pictures and molds like I planned.
I was wheeled back for surgery, they intubated me, and prepared to cut through the layers of skin and muscles into the warm cozy home that had kept my baby safe for 26 weeks so I would survive pregnancy. I felt like I was being crucified, my arms out, my clothes gone, and a sheet pulled up towards the ceiling below my neck. It was surreal. Two people were complaining, another two were giggling, and while my hair cover slid into my eyes, I was crying and I was alone. My husband was not allowed in with me. I laid there and prayed for our lives. I remember nothing else. My husband tells me they immediately took our baby, our son, over to Children’s hospital to be admitted to the NICU. We had no names ready, but decided on Maxwell. He was born November 21, 2013 at 4:58 pm; he weighed 1 pound 8 ounces and was 12 inches long. He had a head full of black hair. He had respiratory distress syndrome and was given a breathing tube right away. He was small for his gestational age, but still in the normal range. About the size of two cell phones.
I wasn’t allowed to see Max for two days until my blood pressure improved, I could stand, and I was off of the magnesium sulfate I.V. My husband had seen him, at least. Others had seen our micro preemie, too, but I had not and this was hard to swallow when I watched visitors go from my half empty Mommy and Baby room to see my son, when I had never even looked at him. I cried so much. When I finally did, I thought I knew what to expect, but I still lost control of my emotions shortly after seeing my baby in the plastic pod isolette that would be his new womb until he was discharged into my arms.
To see him so small, yet so strong amazes me. He breathes so fast, and fights so hard to stay in this world. Things in life are quickly put into perspective of what is important and not important now.
Prematurity is difficult on us, but especially Max.
He is taken off of his ventilator, he has a pic line inserted… has an infection that the doctors can’t find the source of. He has had three attempts of a straight caths without success. On Friday, November 30, 2012 he has a spinal tap, and Sunday December 2,2012 he has a blood transfusion. More blood transfusions are done, he is moved to having his oxygen by nasal cannula. All internal lines are finally removed. He is fed by a tube until he is big enough to suck, swallow, and breathe on his own. He doesn’t need any blood pressure meds, heart meds, or other meds. We are lucky; we know other preemies do. And yet there is no word as to when he is coming home. Our visits consist of driving to Milwaukee and hanging out with him at the hospital while he grows and strengthens to come home.
So many things are unknown with HELLP syndrome. I was just one of the small percentages to go through it. HELLP syndrome is listed as a “rare disease” by the Office of Rare Diseases (ORD) of the National Institutes of Health (NIH). This means that HELLP syndrome, or a subtype of HELLP syndrome, affects less than 200,000 people in the US population. The brilliant head of high risk OB suggested studying me since I am different than the typical case, and maybe there is an underlying disease or disorder like lupus that triggered this. Of course, being in healthcare, I will do whatever I can so another family, mom and baby, can learn from this and possibly not have their pregnancy cut short and emotions stirred up. Not a lot of people know what HELLP syndrome is. Some professionals don’t fully understand it either. If more awareness can be drawn to it and research and education can be done, we will have a start to reducing morbidity and mortality of babies and moms.
More time passed. I graduated with a bachelor’s degree in nursing. We were able to bring Max the micro-preemie home on February 11, 2013, still on oxygen. Three months later, we left the oxygen behind. I finally had a cordless baby!
Max will be one in just a few weeks. I feel thankful yet still have so many mixed emotions. He won’t have been home a year but he will be a year old. I’m still healing emotionally. Sometimes my heart sinks when I hear pregnant mommies say they want the baby early or my mind wanders to this time last year.
But someday the pain will subside. The most important thing is that we are here to tell our story.
Would you like to share your prematurity story in your own words? Email firstname.lastname@example.org.