How it started

I had a hard time getting pregnant. Though Jon and I were among the first to have a baby between our college friends, it seemed like a lot of medical intervention to get my body to cooperate. Married at 27, we envisioned plenty of time before trying for a baby. I have intractable epilepsy, a result from a craniotomy performed in 1995 when I was 22 years old – which is a whole different story – but meant I was on strong neuroleptics to stay seizure-free. I had begun my doctoral studies in human development at Boston University in 2001 and as I was rapidly learning about the brain and behavior and doing my own research, decided I needed to be off all medications to safely carry a pregnancy. Being located in a city with several of the best medical facilities and experts in the world, I had my pick of Harvard, Tufts, BU, and other world class educated physicians. I began care at Massachusetts General Hospital and was seen by a neurologist who agreed to wean me off neuroleptics. The tapering process lowers the dose in increments over the course of a few weeks in an effort to not jolt the brain and then hopefully be seizure-free. I can’t precisely recall how long it had been, but I was not completely off them and still taking a low dose when I had a break-through seizure in May of 2002. At some point I will write more about my experiences with seizures as this one in particular was the first time I had an awareness and shift in consciousness before going out, and the doctor said it was likely because I still had a low dose of medication in my bloodstream.
After this failed trial, the neurologist refused to allow me to stay off meds. Sitting in the exam room, in a cold plastic chair, my hands gripping the edges, turning slick and clammy yet I could not move them or stop my lip from quivering. I finally looked him in the eye and said he was wrong, after all he is just a resident and I wanted to be seen by someone else. Even as the words came out of my mouth, I was horrified and ashamed because I knew this wasn’t about him. But, at my request, the next appointment was with a female neurologist and she agreed she would not condone going off medication again. Her approach was more tender and she referred me to a reproductive endocrinologist. I promptly quit her and this time went to a neurologist at Beth Israel Deaconness Medical Center. The new doctor was also a resident (by this point I realized these are all teaching hospitals and anyone I saw would be a resident or intern). Dr. Bernard Change was very patient and instead of saying “no”, he changed my medication to one with better efficacy in pregnancy. He must have spent 45 minutes with me, taking my history and then giving me some treatment options. I was slightly more hopeful.
I decided to go back to MGH and see the reproductive endocrinologist who was referred to me. My first appointment with the endocrinologist I was told I was “too heavy right now to get pregnant and my health needed to get under control first.” Of course all I heard was that I was fat, which drew up years of feelings of shame, doubt and never being good enough. Even my doctor rejected me. But she ran tests and wrote a prescription and sent me home with books and websites. She diagnosed me with PCOS (poly-cyctic ovarian syndrome). She scolded me several times at appointments but I kept seeing her and in about six month’s time I lost 30 pounds. By now I was also completely stabilized on my newer “safer” neuroleptic, so Jon and I decided to go off birth control. Then a year goes by and nothing. We took every test and all seemed a mystery. Finally the endocrinologist suggested prescribing Clomid to promote follicle growth, along with hormone shots and IUI (intra-uterine insemination). Anyone who has gone through this knows the time and dedication it takes in going to the doctor to have ultrasounds (sometimes going back 3 or 4 days in a row!) to monitor follicle development, repeated blood draws, and then be on the ready for the procedure. It was the third cycle when we got that exciting news of seeing two lines on the pink wand I just peed on.
As soon as the endocrinologist confirmed the heart beat at 6 weeks, I immediately went to see my neurologist. He was happy for us and connected me with an OBGYN just down the hall from his office at Beth Israel. Little did I know this doctor was the head of Obstetrics at Harvard Medical School, award winning author and advocate for public medicine. Dr. Hope Ricciotti was the most down to earth and caring doctor from the minute I met her. I felt immediately at ease and excited for starting our family. My husband was equally excited, looking at baby soccer balls and footie pajamas and all the fun things couples do when expecting. The first ultrasound was scheduled for measurements around week 11.
For some reason Jon didn’t come with me to the appointment. We were very early in our careers, so he must have thought he couldn’t leave the office to meet me. I also didn’t realize the test would be done in a different part of the hospital with a radiologist tech and not my doctor. Those exam rooms are always cold and dark, so odd. The cold gel on the belly with a stranger who doesn’t really look at you, focused on a little square TV monitor. She is clicking and jostling away, then briefly points some things out to me. Here are the four chambers of the heart, here is the head. Those squiggly things are the legs. Oh, there’s an arm. Then she wipes the goo off me with scratchy blue paper, says the doctor will be in soon, and promptly leaves. OK?
I wait several minutes kind of half lying, half sitting there until a woman I’ve never met before comes in. She explains she is Dr. so and so and is a radiologist. She pulls up the monitor and points at the picture of the fetus’s belly. She shows me the umbilical cord, which is huge in proportion to the body at this point, which I understand. Then she zooms in on the image and says, “see this bundle on the cord? This is your baby’s intestines. This is totally normal that the cells that become the intestines develop and grow around in a coil up and then back down the umbilical cord into the body. I think we just caught the ultrasound right when this development is happening, but we want to see you back to make sure it has traveled back down into the abdominal cavity. Get dressed and make an appointment to return in one week. And don’t worry.” Then she left.
I have no memory at this point how I got home. Maybe I went to my office to finish the work day, though I really don’t know. We had cell phones back then, but texting wasn’t a thing so I just waited until Jon got home. I did my best retelling him everything that occurred and what the doctor said. I asked if he would come with me, because it was scary to be there alone. He said of course and to not worry. Over the next few days, I really did my best to not think about it, but I was on the internet and apparently so was Jon.
“Omphalocele is a birth defect in a baby’s abdominal (belly) wall that develops before they are born. It is a rare condition causing an infant’s intestines or other abdominal organs, such as the liver and spleen, to stick outside of the belly through the umbilical cord.”
“Omphalocele is sometimes associated with other birth defects such as trisomy 18, cleft lip and cleft palate.”
“Trisomy 18 is a chromosome disorder characterized by having 3 copies of chromosome 18 instead of the usual 2 copies. Signs and symptoms include severe intellectual disability; low birth weight; a small, abnormally shaped head; a small jaw and mouth; clenched fists with overlapping fingers; congenital heart defects; and various abnormalities of other organs.”
I said, this is very rare. It’s not going to be that. Jon clearly thought about this more concretely than I did. “This could be very bad. We have to face that. Yes, let’s wait for the ultrasound, but if the organs are outside the body this is too big a risk. It would be better to terminate now.” Absolutely not. So much went into this. The baby is fine. I could not, would not, terminate. We didn’t talk about that again and waited for the appointment.