"I grew up in a suburb of Boston. I moved to Vermont for college- fell in love with the mountains, and have been here since. I have worked for the past twelve years at a human services agency in the non-profit sector, providing wrap-around, strength-based services to families in need- a profession that is both rewarding and challenging. I enjoy taking road trips with my husband and our two "rescue" dogs, and exploring the great outdoors."
"I always imagined I'd be the type of woman that loved being pregnant! I'd wanted to be a mom my whole life, and waited for the right time. The man I fell in love with after college had two young children already, and I adored them! I went back to school to get my M.Ed, and focus on my career. We were married, and enjoying our time together as a couple. We decided to try for a child after about eight years together. I did my best to eat well and make sure I was in peak physical shape before we started trying, and I got pregnant right away. I found out I was expecting right around my 33rd birthday. My step-kids were 13 and 11, and excited about having a sibling. They became obsessed with reading the "Big Book of Baby Names," and started a list of the names they liked. They were full of ideas and hope for the future. My heart was so full.
I knew something was wrong from the beginning of the pregnancy as they kept changing my due date. He's measuring small, they'd say, so we'll push up the date. This happened three times.
Why is he so small? What's wrong with him? I cried to my husband in the car after the third time.
My first trimester was predictable with morning sickness. I kept waiting for that "honeymoon period" of the second trimester I'd heard of from others, but it never came. Bright lights, smells, noises- everything made me puke. I had migraines that would last up to five days- too intense to sleep. I wrapped ice packs and peppermint oil on my head with no relief. I felt awful all the time. I work with pregnant women professionally - no one ever complained. Pregnancy didn't affect anyone like it did me- missing a week of work at a time because of headaches and chest pain. I tried not to complain too much, because a lot of the pregnancy sites, like the Bump, say these symptoms are normal for pregnancy. My OB reiterated that. You're a healthy woman, pregnancy should be a breeze- he kept telling me. This can't be normal I thought, but the professionals said otherwise, and I believed them.
Around 13 weeks (based on the most recent due date), the quad screening showed the baby had a high probability of Intra-Uterine Growth Restriction (IUGR) and possibly spina biffida.
The OB sent me to the Maternal Fetal Medicine (MFM) clinic at another hospital for a better ultra sound. I learned around 16 weeks that the baby's spine was fine! Great news! But he wasn't growing very much, and had a Single Umbilical Artery (two vessel cord), and dilated bowel loops. The geneticist told me it was possible everything would be okay, but it was likely I would have a 'non-viable delivery.' I tried to stay positive, but that was a lot to take in at once. And I couldn't stop thinking about my baby dying inside of me.
Around 19 weeks, I admitted myself to the local labor and delivery (my original OB) because of chest pain that wouldn't quit- I'd been pacing the house for at least a week, couldn't sit, or lay down because it hurt too much. L&D checked the baby's vitals. All good. They gave me a heated blanket for my chest and back, because the pain radiated through my chest into my back. Like a knife blade- constant and consuming. But the doctor said I'm a healthy woman, and it was my first pregnancy, and as long as there is no cramping, everything is okay. Try tums or gas x, they said, and released me, five hours later- and never took a single blood test.
The chest pain remained. When I was around 22 weeks pregnant the baby was measuring at least two weeks behind- again. I mentioned my headaches, and had to do a 24 hr protein screen- for potential pre-eclampsia. I had no protein in my urine, and my blood pressure was fine- and that was good news, they told me. But the baby's heart was stressed, and it's possible he wouldn't make it- I was told again. Amniotic fluid was really low, and there was a problem with the blood flow. Maybe the placenta didn't hook right, but there is no way to be sure. I cried and cried, and obsessed some more. Please hang in there little guy I whispered under my breath constantly, holding my belly.
By 24 weeks, the chest pain was still there, getting worse. I couldn't lay down, it hurt. I couldn't sit, it hurt. I paced the house all night, taking brief pauses to writhe in pain on the edge of the sofa. I had consumed more tums, gas-x and ginger tea than anyone should. Nothing helped. My husband noticed me in pain and tried to get me to go to the ER. His children were at the house, and I didn't want to upset them. I said I'm sure I'm fine, I have no cramps. I called the ER though, just to be safe, and told them what I felt. They sent me via voice-mail to MFM, and I had to leave a message Saturday night. I called again on Sunday, and got the same response. I felt awful, but no one seemed concerned. So I dealt. I had a report due at work that week, so I went to the office Sunday afternoon. I had a feeling I wouldn't be back to work for a while, so I got my files in order and put the report in the outgoing mail pile. I cried in the office by myself because it hurt so much to sit or walk. By Monday, no health professional had called back. I was too sick to work, but I had a scheduled ultrasound on Tuesday, so I waited for my appointment, which happened to be the US presidential election- November 6, 2012.
I got to the MFM clinic at ten am and had an ultrasound. The baby's heart was doing so much better! I could see the joy on the technician's face! I had to wait hours to see the doctor for the consultation appointment, trouble with another patient, he said. By five o'clock, I was meeting with the doctor, and casually mentioned my chest pain, and that nothing was helping relieve it. He pushed his fingers into my chest. Could be your gallbladder or liver, he said, as casually as I mentioned the pain. I'm sure its fine, but we'll take blood to be sure. The lab was closed, because it was so late, so they sent me to the maternity ward, drew four vials of blood and tried to admit me. I asked if I could please go home, the doctor just told me the baby is doing great. They agreed, and said they'd call me within the hour if anything looked off. My husband and I stopped for some take-out, and drove the hour ride back to our house in the country. I was feeling a little guilty- never made it to the polls to vote- they were closed by the time I was released- and it was the first election I'd ever missed. No one from the hospital had called. l showered, and still no phone call. Couldn't eat, it hurt too much. I survived the night- no phone call. Typed an email to my coworkers that I had no phone call, and the baby looked good, but I didn't feel well and was staying home for the day. Then the hospital called, literally after I hit send. You must come back to the hospital right away, your labs are off. You will be staying here for a while."
Lines of IV's: Magnesium sulfate, oxytocin, oxycontin, steriods, morphine.... Misoprostal inserted every four hours.
Hourly blood draws. Blood pressure cuffs on automatic, puffing and sinking and pneumatic compression device- I was bound to the bed by my arms and legs. I remember waking in a frenzy at one point and trying to rip it all off of me. What the hell is happening!? My husband trying to calm me down....
On November 8, 2012 at 7:30pm, I delivered our beautiful baby- he slipped silently in and out of our world after 32 hours of labor. We named him Dylan. He was 10 and 1/2 inches long, and weighted 15 ounces. Ten perfect fingers and toes, soft fuzzy black hair. So tiny, and perfectly formed."
We had an autopsy of the placenta done, hoping for answers. We learned that Dylan had something called complete trisomy 22. He had three copies of the 22 gene. Typically, complete trisomy 22 "spontaneously aborts" (miscarriage) before the end of the first trimester. Our little fighter tried so hard. We also learned that the placenta was in very poor shape. Our doctor thinks that T22 caused the placenta to not hook correctly to the uterus. The geneticist thinks these circumstances make the recurrence of HELLP in a future pregnancy unlikely. But the idea of going through this again is terrifying.
The doctors have told me that I have made a complete physical recovery. I am lucky HELLP was caught early enough in my case so that I do not have lasting damage to my organs. Mentally, I have a long road ahead of me. I have been diagnosed with Post Traumatic Stress Syndrome. For months after my diagnosis, I would awake in the night, feeling like I was attached to the bed as I was in the hospital, among other extreme visions, thoughts, and fears that would take over my daily life. I am coping well now, however, and blessed to have amazing support from my husband, my family, friends, and my coworkers. The one thing I have learned about life from my HELLP experience is that the future is not guaranteed. Life cannot be planned, and it rarely goes as predicted. But it goes on, and so will we- even if its minute by minute, day by day. "You never know how strong you are until strong is the only choice you have," Bob Marley.
Rest in peace, my little dragonfly. We will love you for always. ~ Dylan Hayes, November 8, 2012 ~"