Mother to Julia Isabel
April 13 – April 14, 2011
When my partner came back from a couple of months of studying in Spain in July 2008, we started trying to have a baby. Along the way to getting pregnant, we got married and bought a house with good space for kids and a nice yard. We had a lot of patience and did not go see a doctor for a fertility work-up until we had been trying for 16 months. In the end, we had to do IVF to get pregnant.
On our first round of IVF, I was pregnant! On April 5, 2010, two days after our 1st wedding anniversary, the nurse from our clinic called with the good news (we held back from taking a home test and waited for the blood test). I met my husband for a walk at lunchtime and told him the news in a park next to the World Bank building. We got to savor it for 24 hours before I started cramping and bleeding, and we knew that this pregnancy was letting go.
We persevered with IVF. On our 4th transfer, we got a positive result again. This time, we got the call the day after Thanksgiving in 2010 but honestly, I already knew because of how I had been feeling. We told only my mom, and in the vague way of saying “the news is good so far” because she knew about our IVF treatment. Other than that, we savored our little one’s heartbeat at all the doctor appointments and kept quiet for a long time. I had a CVS test done at 11 1/2 weeks because of a poor nuchal screen, but there were no genetic problems found. We told our families and began sharing with friends at 14 weeks. We were persuaded by the odds that we were going to have a tiny baby in our house by the beginning of August. At 16 1/2 weeks, I felt our little one move for the first time while on the way to visit my two young nieces in California. By this time, we knew our little one was a girl and we were enthralled by all the things we saw ahead of us while we were at my brother and sister-in-law’s house.
At 22 weeks, at the end of March, I started having intermittent but extremely painful episodes of pain in my chest and back between my shoulder blades. My first inclination was that it was heartburn. I started trying to modify what I was eating to control it, and while it didn’t seem to correlate entirely with what or when I ate, it was only intermittent.
On April 7, two days after our 2nd wedding anniversary, at 23 1/2 weeks, we had an appointment at our maternal fetal medicine specialist for a routine ultrasound. We were told that day that our little girl, who was kicking and moving with a great heartbeat all through the exam, was measuring significantly behind in development and the placenta seemed small. We had been told previously that she was measuring small, but that was just it—what had been small before and written off as family history of many small full-term babies, now had become a point of concern. I also told the doctor that day about my pain, which was happening with more frequency now, and he also mentioned heartburn or gall bladder. We were told to not worry too much and come back in a week. No one took my blood pressure that day and I was given no restrictions on my activity, although I specifically asked about whether it would help. My husband & I went out to breakfast afterward and I cried over my eggs. He kept trying to tell me to stay calm and that everything would be ok. I found out later that he cried too when he was by himself. We never made it to that appointment a week later.
On April 11, I spoke to my regular OB about my pain, which had become constant and excruciating. She specifically asked if it was on my right side and I said no, because for me it was always in the center (upper right quadrant pain is a symptom of HELLP, something I had never heard of at the time). She said it was probably indigestion and advised me to see my primary care physician. I called immediately and made an appointment for the next morning. I also noticed that afternoon that my ankles and lower legs were quite swollen.
By this time, I was 24 weeks and in near constant pain. I couldn’t sleep no matter what contortions I tried with pillows and at least one time, I just lay on the floor praying for relief while I tried to breathe deeply and relax. When I went to my primary care doctor, my bp was 160/100. She gave me a new prescription for bp meds. She also thought my pain was heartburn and gave me a prescription for zantac. I went back to work and arranged with my supervisor to work from home most days. I went home that night and talked to my little girl and begged her to grow and told her that I would be trying hard to make it better for her.
The next morning, I brought my laptop and a bunch of work documents into bed after a restless night and tried to work. My husband sent me an email asking me to weigh myself (he had been doing his own research into the situation) and I discovered that the swelling wasn’t just my imagination; I had gained 4lbs in 3 days. I took my bp on my home machine and it was 170/117. I called my OB’s office and got an appointment for a few hours later. Then, my OB called back and said to go to the hospital and she gave me two choices with the best neo-natal units in the area. I waited for my husband to come home from work and pick me up. He had our only vehicle and I just didn’t feel well enough to take a cab. As I walked out of the house to leave, I looked around and tried to imagine us coming home shattered. But I really didn’t believe that would happen.
The first hours at the hospital were mostly a blur of listening to the fetal heart rate monitor and watching the repeatedly high bp readings while waiting for my lab results to come back. I felt intermittently scared and tense, but mostly I just felt expectant, like there would be an answer to all of this and everything would be ok because I didn’t feel particularly sick aside from the back pain. At one point, we were told that I would be admitted to bring my blood pressure down. This seemed hopeful. Eventually, we went for an ultrasound. We saw our little girl moving and waited for the tech to take measurements. We started feeling very trepidatious when the tech stopped making small talk and became very intent on what she was doing.
We learned that the flow of nutrients into the placenta had all but stopped. We were told that my liver function was impaired and my platelet count was low. We were told about HELLP for the first time. We were told that the only treatment was to deliver the baby but we could try other measures for a few hours and check my levels again. I felt detached for most of it but slowly anger started to seep in and compete with the sense of despair that I wanted to fight off but was powerless against. My husband asked if my life was in danger and he was told yes.
From there, I was given oral bp meds, a steroid injection, and hooked up with a magnesium sulfate IV. We spoke to our parents, who were 500 miles away. We chose a name for our little girl. We met with the neonatologist who told us that there was likely nothing that could be done based on our little girl’s estimated weight. She spoke more to my husband than to me, because I just could not engage. I was in denial.
When my labs came back again around 10pm, the doctor came in and simply shook his head while saying that everything had gotten worse and I had to be prepped for a C-section immediately. If we didn’t go right away, my platelet count was in danger of becoming too low to safely do the C-section. Everything began to happen extremely quickly and all I could do was cry. I could not believe that this was happening; I was terrified to watch the end of my baby’s life unfold. In the end, I was able to get a platelet transfusion, which made the surgery much safer. When I got to the OR and it was time for the epidural, I was beside myself sobbing. The nurse who was positioning me for the epidural seemed to think that I was crying because I was afraid of the needle. Thank goodness for the anesthesiologist who was my advocate through the whole time and who I felt was really on my side. I still feel scared remembering the terror that I felt being prepped for surgery that night, for a procedure that I absolutely did not want to have because it was just too soon.
However, my epidural did not take and there was no time to delay the procedure. My husband was brought in at one point to be there for the C-section but he was quickly ushered out again when they realized the epidural wasn’t working. There wasn’t time to try again so I had to be put under general anesthesia.
When I woke up, my husband was by my side with Julia Isabel in a bassinet, wrapped in a blanket with a little hat on her head. He told me about her life. She was born at 11:26pm. She was even tinier than estimated and there was nothing to be done. He held her, sang to her, felt her move, and played I’ve got your nose with her. Her heart rate slowed and she died at 12:09am. He held her for her entire life. This is a special part of our story to me, because I got to feel Julia move so many times and her daddy got to feel her move too. I am also so comforted that he was there for her with so much love and affection.
During the night that followed, I could not sleep for even a minute. I was devastated that we had lost our little girl, that I had gotten so sick, that every minute of our lives to come were going to be different than what we had been planning just one day before. I also felt a quiet peacefulness at times during the night that I have a hard time explaining. But those moments—when Julia’s body was right there by me and I held her on the outside for the first time, admiring her long fingers just like her daddy’s and her cute nose just like my niece—those moments give me hope even now, when I still cry every day and I still miss her so very much.
Amy can be contacted at firstname.lastname@example.org