My name is Julie Bindeman and I am a clinical psychologist who practices in Rockville, Maryland with a specialization in Reproductive Health. I’m a life-long resident of Montgomery County where I’ve lived with my husband of ten years and our two children. I want to share the story of how we grew our family.
Fetal anomalies do not discriminate and they can occur in anyone. They don’t care about your marital status, your age, where you live, what your religious beliefs are, or what your views on abortion are. I am blessed to have two healthy children and am expecting another. However, like many, my path to parenthood was NOT easy. In fact it was exceptionally difficult and at times heart breaking. After initial success with a son, my husband and I were pregnant THREE times before I gave birth to my beautiful daughter. A total of four times within the span of only 2.5 years.
My first pregnancy after giving birth to my oldest son resulted in an early miscarriage. My husband and I were devastated. After taking time to grieve, we tried again. Thankfully, I became pregnant again quickly. However, the beginning of my pregnancy was not as anticipated. I suffered from terrible blood clotting and even thought I miscarried---for a consecutive time. I went to the doctor, my blood was drawn, and I received an ultrasound. I was put on “pelvic rest” and told to come in the following week. There was a heartbeat, and eventually, the bleeding stopped. All of my first and second trimester tests came back negative---my baby looked healthy! I was thrilled beyond words and even started telling friends and family once the first trimester was past. My due date was April 2010.
Following ACOG guidelines, we went for our 20-week ultrasound. We were looking forward to learn the gender of our baby to be. Unfortunately, my OB’s office couldn’t do the scan and we had to go elsewhere. Thankfully, my doctor was able to book an appointment for us at a nearby radiologist’s office instead. The tech was very talkative, but she didn’t tell us anything about what she saw, except we were having a son. We were told to return to my doctor’s office to go over the scan.
We met with our OB who subsequently told us that the ultrasound showed our child’s brain ventricles were nearly twice the size they should be. Double. My husband and I sat in stunned silence and we slowly began to cry, deep sobs of pain.
We then met with several specialists to get second and third opinions: including a radiologist, pediatric neurosurgeon, and genetic counselor all at Children’s National Medical Center. Each specialist confirmed the horrible news----- our best-case scenario, if the baby even survived to term, was that our son would have the developmental ability of a 2-month-old. One specialist talked about special chairs we could order for him as he grew and the numerous brain surgeries that he would have to undergo, beginning right after birth.
We were given a diagnosis of ventriculomegaly and hydrocephalus with the likelihood of anencephaly. We were told our two options: we could terminate the pregnancy or carry the baby to term and see what happened. I asked point blank about the chances of a miracle. The doctors at Children’s tend to be “hope-givers”—but for my question, they had no optimistic outcome to share with me.
@MorganHarperNichols
After the visit, there wasn’t much discussion between my husband and I, as we had been talking all weekend prior going to Children’s. We decided to end the pregnancy. I wanted to be around my family, so we decided to deliver locally, as the surgical option would only be available in another state, despite this being a legal option in Maryland, there were none. We also had to decide what we wanted that to look like: would we hold the baby, name him, and bury him? There were so many decisions to be made and we just weren’t in the state of mind to make them. The next day was Thanksgiving, and I somehow made it through that holiday completely in a fog, trying to ignore the kicks that were getting stronger. These kicks had no conscious thought behind them, nor would any of my son’s actions.
My husband and I went to the hospital and worked with the medical team to induce labor. My son died soon after delivery and I was discharged the next day. I was 21 weeks gestation.
Things felt so surreal. My body acted as though I had a baby-----though my heart and mind knew better. I cried for days on end.
We had a genetic test done to see if this was the result of an X-linked trait. We also had the amnio tested for one of three viruses known to cause ventriculomegaly. All of these tests were negative. Our doctors were fairly confident that it was a fluke occurrence—a million to one odds.
Five months later I became pregnant again and I was terrified.
We were being monitored by ultrasound—just in case—every two weeks to watch brain development. All of the regular prenatal tests came back negative for the “usual suspects” of chromosomal concerns.
At 17-weeks, the ventricles were measuring at the threshold of 1cm—the top of “normal”. The following week, I was back at Children’s, hoping for a miracle. In addition to ventricularmegaly and hydrocephalus, we were told that the baby had a condition called partial agenesis of the corpus collosum. The corpus collosum is the band of neurons that connect both hemispheres of the brain. Outcomes for individuals that only have a partial one show to be poor, especially when other brain anomalies are present. We were told that the first baby also shared this additional anomaly, but that the team didn’t want to overwhelm us with additional information.
My husband and I faced another agonizing decision. I would not wish this on anyone; once---let alone twice. On August 13, 2010, we decided once again to terminate the pregnancy and said goodbye to our second child, this time to our daughter. We were able to choose a surgical option due to the gestational age in Washington, DC.
After a series of tests and doctor consultations, the best guess was that our losses were the result of a recessive combination of genes: one from each of us. This means that there is a 25% chance of reoccurrence in each subsequent pregnancy.
The second loss was its own grief experience compounded with the other two. I felt hopeless. I was in the depths of sadness, and knew no one who could understand what it was like to have multiple losses, especially for the same conditions. At this point in time, I found a web forum for women who elected to terminate wanted pregnancies due to fetal abnormalities. These women were a lifeline to me: they knew what I was going through and could say, from experience, that it gets better.
It has been nearly 8 years since my first termination. I am back to being myself: optimistic and eager to share our lives with another child. I was able to fulfill this dream in July of 2011, when I gave birth to my daughter, my second living child, who is wonderful in every way. In June of 2013, we were able to successfully complete our family when a second little boy joined us.
If many of the proposed legislation (including the Pain-Capable Unborn Fetus Act) had been law, it would have prohibited me from terminating my pregnancy as I was 21 weeks gestation and I did not fall under the pregnancy being a threat to my physical health. This anomaly cannot be tested for, and only given the knowledge of the first pregnancy, we had earlier monitoring options available.
Decisions regarding pregnancy and reproduction should be made between a woman and her doctor. No one---especially the government should interfere, as it truly is a family decision. These laws are an affront to me and ALL the women like me who are faced with exceptionally challenging situations in highly abnormal circumstances. Federal laws should remain as they are—trusting women to do the right things for themselves and their families.