This is the story of the sweetest little baby boy, the light of my life, and how HELLP stole him away.
We found out I was expecting in January. When I told my husband Joe, he warned me not to get too excited because a lot of things can go wrong early on, but we were both thrilled to finally be starting this new chapter in our lives. When I went to the OB for the first time, they did an ultrasound. At only 10 weeks old, our little baby was moving like crazy in there, growing away. My due date was set for September 1. Our excitement grew as the weeks passed. I felt great during the first trimester – no morning sickness at all, just more tired than normal, but I was dealing with a lot of stress at my job as a high school teacher.
Then, at 20 weeks we went out for dinner to celebrate the end of tax season (Joe is an accountant) and I got very sick that night. I thought it was food poisoning, took the next day off, and told my OB at my 20 week appointment later that week. She wasn’t concerned. My first blood pressure reading at that appointment was high, but it was also an exciting day because Joe was there to see the baby for the first time, plus the reading was taken right after we walked in from the parking lot. When the nurse re-took it again later it was fine. I was also concerned that my tummy wasn’t very big compared to a colleague at work who was due a couple weeks before me. The OB measured me, though, and said I was on track. The ultrasound showed that the baby was a bit small and that there was possibly some abnormality with the brain – enlarged ventricles – so I had to go see a specialist for a more detailed ultrasound. We were terrified that there might be something wrong with the baby, but that was only the beginning…
In the meantime, my “food poisoning” symptoms didn’t go away. I felt nauseous on and off for the next few weeks. I also started developing pain in my upper abdomen. It started right under my sternum at first, but later it was concentrated in my right side. The pain was episodic, but it kept getting worse and worse, until the point that I was up 3 or 4 times a night rocking back and forth, crying in pain until the ibuprofen kicked in (that is, if I was able to keep the ibuprofen down and if I hadn’t already exceeded my max dosage for the day). I didn’t know if the pain was causing the nausea or vice versa. I had never had heartburn before, so I didn’t know if that’s what I was experiencing. This being my first pregnancy, I had no idea what was “normal.” Plus, I kept hearing that no pregnancy is “normal.” I didn’t want to be a hypochondriac, but I did finally break down and start making phone calls to the doctor, or actually, her nurse, as my doctor never spoke to me again after I started getting sick.
Somewhere within that time frame, we went to get the more detailed ultrasound. Much to our relief, that doctor said everything looked within the normal range, that the baby’s brain was just fine and there were no defects. He confirmed that the baby was small, but said that I was small too, so it was nothing to be concerned about, that we should just come back for a growth ultrasound in a month. We thought everything was going to be fine. However, the “heartburn” and nausea kept getting worse. After many conversations with my OB’s nurse, they finally had me come in for bloodwork, which showed elevated liver enzymes. I remember being in so much pain on the way to the lab that I literally thought I was going to pass out and get in a car accident. But, like it had in the past, the pain eventually subsided to a bearable level. I was sent to see a gastroenterologist, with the suspicion that I might have gallstones. After an abdominal ultrasound, that was ruled out. The next theories were ulcers or fatty liver. I was getting progressively sicker, and the worst part was that no one knew what was going on. I was starting to think I was crazy – was I just that much of a wimp?? If this pain was necessary to keep my baby healthy, though, I would have gladly dealt with it for the next 4 months. I tried to go to work as much as possible, since I wanted to save up my sick days for maternity leave. I would shut my classroom door and turn off the lights as soon as the kids left because I had to curl up in pain and throw up. When I walked, I was all hunched up because the pain was so intense. The nurse kept telling me to eat and stay hydrated, but, toward the end, I wasn’t able to keep anything down, even Gatorade or toast or my prenatal vitamins.
Like I said, this went on for three weeks, until the pain got so bad that I finally had to give in and let Joe take me to the ER. I have always been a healthy person – good blood pressure, never been to the ER before – so going to the ER was a big deal. They sent me to labor and delivery right away, then back to the ER, then back to L&D, but after a night in the hospital, we still didn’t have any answers, just prescription heartburn medicine and codeine. A young doc in the ER mentioned HELLP that night, but the obstetrician dismissed the diagnosis because I didn’t have high blood pressure or low platelets and because I was only 23 weeks along. The pain in my abdomen was excruciating by this time, and even the prescription pain medicine couldn’t touch it. A day later I had to go back to the ER because I couldn’t stand the pain. This time, my blood pressure was critically high and my platelets were low. I was in so much pain that I vomited in the ER trash can. The new symptoms immediately convinced the doctors it was HELLP. By this point I had done a little reading and I knew HELLP meant delivery and that the baby was probably not “viable.” The whole thing was surreal, though. I was convinced that everything was going to be fine – in this day and age, babies don’t die! I was sure I was going to be fine, too, although the doctors and nurses around me seemed very nervous. I had never seen things happen so quickly in a hospital. I was rushed back up to L&D and put in a magnesium drip. The OB on call (who is from the same practice as my doctor) said she had never seen a case of HELLP this early before in her 30 years of practicing – I was 23weeks, 2 days.
The next day or so is pretty foggy. I had to be moved to the other hospital in town because it had a level 3 NICU. We asked about being med-flighted to a university hospital to try and secure the best care possible for the baby, but were refused because of how early I was in the pregnancy and how sick I was. After a ride in the ambulance, I was prepped for an emergency c-section. Another ultrasound before the surgery predicted that the baby would weigh around 15 ounces. He ended up being just 10; most likely he had stopped growing much earlier, at around 20 weeks or before. I don’t remember much about the surgery, other than the incredible pain from the catheter they inserted beforehand that was too big, the assistants in surgery counting the surgical instruments, and the doctor performing the surgery commenting that they were waiting for the other doctor to arrive.
When I woke up in the recovery room, I was told we had a baby boy and that he had made it through delivery. In my messed up mind at the time, I remember being scared to see him – I “didn’t want to get too attached” in case he didn’t make it. Luckily, Joe convinced me otherwise; I was already very much attached. I foggily remember my bed being wheeled into the NICU, reaching my hand into his isolette, and his tiny fingers wrapping around mine. That night, my blood pressure was monitored closely, but it quickly went back into the normal range. I had a lucid dream that the baby’s name was supposed to be Gabriel for some reason, which was not the name my husband and I had discussed earlier. However, when I told him in the morning, he agreed it was the perfect name for our little boy.
Over the next month, we visited Gabriel as much as we could. The NICU was a completely foreign environment, and Gabe was so critical that all we could really do was reach in and touch him for a few minutes at a time. Every day was an emotional rollercoaster. The doctors and nurses were amazed that he had survived delivery, and even more amazed that he was so strong. We knew his chances were not good, but we prayed and thought positive and spent as much time with him as we could. Eventually, we were able to help with some of his care, changing his diapers, taking his temperature, swabbing his mouth with colostrum or sterile water. Our sweet, precious, beautiful, perfect little fighter stayed with us for an amazing 5 weeks, but in the end, after countless needle pokes, 2 procedures and a surgery, his little body was just too small and on June 11 we had to make the decision to let him go. The only time we got to hold our son was when we were telling him goodbye. This was the hardest moment of our lives, much too hard to put into words. I never imagined I could feel so sad; we left the hospital that evening without our baby.
The weeks since losing him have been extremely difficult. At his funeral service, the pastor assured us that Gabriel is in heaven, and I know in my heart this is true, but I think of Gabe every minute of every day and feel this incredible emptiness inside of me. I can’t believe that the world just keeps going even though he’s gone. I’m still trying to figure out how to live without him. It hurts so much. I may look normal on the outside, but the pain I’m feeling hurts worse than any of the physical pain I experienced. At least I knew that that pain would eventually subside; this pain will last the rest of my life. We have an amazing support system, but none of our family or friends really understand how much this hurts – thank goodness because I wouldn’t wish this on anyone.
To add salt to the wound, I’ve been able to learn a little bit about HELLP, especially the fact that the chances of it, or preeclampsia, happening again in future pregnancies is high. I have always wanted to be a mom and I know my husband would be an amazing father, but I am terrified that we might end up putting another baby through what Gabriel had to endure. Plus, I don’t know if my heart could take being broken all over again. I’m 30 already, so I feel some pressure – a lot of what I’ve been reading says pregnancies after 35 are at higher risk. I can’t imagine our risks being any higher, but I guess that is possible. I know another baby would never take the place of Gabriel, but I don’t want to just give up hope and let this stupid HELLP win. My new OB (the one with 30 years of experience) is willing to help us if we decide to try again, but I know there are no guarantees. She referred me to a perinatologist; we’ll see how things go.
I’m also being haunted by the idea that stress at my job might have hastened the progression of my HELLP. I’m convinced that if he could have had just a few more weeks to grow, Gabriel could have made it. He was so perfect in every way – just too small. I’m wondering how much stress is a factor with HELLP. I’m seriously considering quitting my job, or asking to go part time. I can’t even imagine going back to work right now; it takes everything I have just to crawl out of bed in the morning.
I had never heard of HELLP before this whole ordeal and I am still shocked that in this day and age there is so little known about such a devastating illness. Even when I was in the hospital, I never felt like my life was in danger. Now I know I’m lucky to have survived and incredibly blessed to have gotten 5 weeks with my precious baby, although it wasn’t nearly enough. My heart aches that he is gone.
Mom to Gabriel: 5/7/2012-6/11/2012 - HELLP syndrome