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Brothers Forever, Twins No More

We thought we were in a dream, all the joys and fears at the same time. We got two cribs, two sets of every outfit (but in different colors), two swings, two of everything…except two identical boys.

We lost Jonathan James when he was 7 months (in utero). I was given the choice, but I never held him. I had to carry his identical brother Lewis Jordan, for an additional 7 weeks. He just was not ready to leave his brother until then. We knew about the extreme risks of twin-to-twin transfusion, how our surviving son would likely have severe brain damage as blood shunting causes terrible problems for a developing baby. We prepared ourselves for the very real possibility that our surviving son might not recognizing us, speak or walk.

We were destroyed.

I spent the next 7 weeks in a rocking chair in the nursery with TWO of everything; rubbing baby lotion on my hands and inhaling, trying to stop the sobs and the unearthly sounding wails that came from deep within my heart.

But I had another to worry about. Lewis. During all this turmoil, the grief over Jonathan could not be allowed to hobble me too badly, I could not let it, I had to be ready to care for the child that was alive and waiting to meet his parents.

Thank Christ the doctors were wrong about Lewis’ challenges. He was born by C-section on a cold January day, crying out when they removed him from his space. I know he cried out because they were taking him from his beloved brother, Jonathan. They thought it was because he was cold and the lights were bright. Fools.

His kidneys began to shut down 3 minutes after he was born. As they whisked him away from me, I demanded my husband leave my side and go with our son, to protect him, and promise to bring him back to me, healthy and safe.

The OB asked me if I wanted to see Jonathan, warning me that the body’s natural reaction is reabsorbtion, I asked only one question, “are you sure they were identical?” The doctor replied, “one sac, one placenta.” I replied with a heavy heart while still wide open on the operating table, “no, I already know what he looks like, just like his brother.”

Two hours later, my husband brought back our son, placed him in my arms and kissed my forehead. The doctors had stabilized him, no further medical issues had arisen and today he is a healthy, happy, wickedly intelligent nine-year old boy.

I will forever be happy that our son is healthy.

I also will be forever crushed that he does not have his twin brother.

I wish I could make the ache go away.

I wish that I was not jealous of other twins.

I will always wish that I had been strong enough to bring both of my sons into this world (though I followed every order from the medical establishment, I will always blame myself).

I wish I had my Jonathan.

Only The Beginning

Our timing was so perfect. We tried casually to conceive for a couple months, then got pregnant the first month I charted my temperatures. Our baby would be born in May, a month I thought was perfect to have a baby. I’d be off all summer on maternity leave, and I’d still be thirty–a milestone that felt like a relief after our decision to start a family seemed to come not a moment too soon. I had almost made it to the end of the first trimester when I started spotting. We went in for an ultrasound and the baby measured 9 weeks, when I knew for sure I should have been closer to 10 weeks… but there was a heartbeat! We had some sweet relief for a week, in which I felt comfortable telling a few more people at work–because the chance of losing your baby after you’ve seen or heard the heartbeat goes down dramatically. But then my hormone levels seemed to be falling after another blood draw. Dr. Google told us that it was normal for HCG levels to fall later in the first trimester, so we tried not to go wild with worry over a weekend spent waiting for Monday’s ultrasound.

Our baby had grown and developed more in the week since we had last seen it, and there was still a heartbeat. The ultrasound tech spent a long time looking at the baby, doing things we didn’t really understand like examining the blood flow. She gave us a couple pictures and said “good luck with everything.” We went back into the waiting room for the midwife on call to let us know the results. They handed me the phone across the front desk and she started by telling me that yes, there was a heartbeat and that was a good sign, but… BUT. The nuchal fold looked thickened, which was a sign of a chromosomal abnormality. We would need further tests and they would help me get the screening scheduled. She was going to come in to talk to us more. I looked across the room at Jed in utter terror. He rushed over to me and I couldn’t believe I was getting this news over the phone in the middle of the waiting room. I started crying instantly and they ushered us into an empty exam room.

We held each other, crying and afraid, until the midwife came in to expand on the bad news. What the tech saw in the ultrasound didn’t look good–the thick nuchal fold and an omphalocele, I would probably miscarry. In the meantime we would go to a big nearby hospital for a better ultrasound. Either way, we would probably “have some decisions to make.”

That was a Monday. The next ultrasound was on Friday. Neither of us went to work that week. We stayed in, crying, devastated. I needed help getting out of bed every morning because the sadness was paralyzing. We distracted ourselves by painting the kitchen and baking zucchini bread. Our 4th anniversary was on Thursday. I was 11 weeks pregnant with a dying baby.

Friday arrived and we trekked through the hospital to Maternal and Fetal Medicine and one of the top ultrasound doctors in the country. The room had a second ultrasound screen on the wall facing the exam chair, so the mamas can have good views of their babies. I couldn’t decide how much I wanted to look. My husband wanted to punch the resident who hovered around, looking at the screen with barely veiled repulsion. I didn’t notice; I was busy trying to survive. After a really long exam, we sat in a meeting room with the doctor and a couple nurses, where the doctor explained that our baby had edema–cystic hygroma–all over its body, to a level that indicated a chromosomal abnormality so severe the baby wouldn’t survive. There was no way to predict how long I would stay pregnant. I could miscarry that day, or I could go to term and deliver a baby with a certain death sentence.

Termination for medical reasons was suddenly an option they would help me look into.

We went home in shock. It was impossible to comprehend the gravity of this most horrible thing that had ever happened to us. We made the heartbreaking choice to terminate our much-wanted pregnancy and scheduled the appointment. There were only a couple places in our area where I could get an elective termination, despite it being for a pregnancy with no chance of a positive outcome. My midwife wanted to help me but there was nothing they could do in their office.

While we waited for that awful date to arrive we both went back to work. I was like a ghost. People were sad for me and each hug made me cry. I also kept catching myself in “preparing for parenthood” mode—bookmarking an article about librarianship and parenthood, making note of the book about treating common childhood illnesses at home, realizing my new shirt would also make a good maternity shirt. Telling a coworker about how we thought we might dress up our 5-month-old as an acorn for Halloween next year. Falling silent and trying not to start sobbing. I realized my life wasn’t in that place anymore, but my heart hadn’t caught up. I hadn’t yet fallen out of the habit of preparing for baby.

Late that week I felt like my symptoms were diminishing–my nausea was suddenly totally gone. I made a last-minute appointment with the midwife to check for a heartbeat. If there wasn’t a heartbeat, I wouldn’t have to go for the termination and I could stay in the care of my midwife for whatever happened next. The ultrasound tech–who I now reflexively hated–told me I didn’t have to look at the screen while she checked for, and found, the heartbeat. It felt so cruelly wrong that I had almost been hoping for the opposite. I wanted the suffering to be over, for us and my poor sick baby. The midwife understood my emotional state and emphasized that when abnormalities this severe are found this early, there is no chance of survival.

That weekend we went to have dinner at my parents’ house. We’re close with our families, and in a terrible piece of timing, my parents had been in France this whole time and dealing with our news on their vacation. This also meant seeing my sister-in-law who was also pregnant, with the same due date as mine. You read that right. She’s not the most empathetic person, and this was the first day of the next seven months she spent avoiding us.

The next day we arrived at the family planning clinic at a different big hospital in the area, first thing in the morning. The only other people in the waiting room were a small cluster of people centered on a very sad woman. They were obviously there for the same reasons we were–the pain bubbles around all of us were huge. We got in to see the doctor and asked if we had any options as far as anesthesia, because we had been told that today we’d decide with the doctor whether I’d be put to sleep. This seemed like news to the doctor, who kept talking about how it was less expensive to do it the way they usually did–local anesthesia only, awake the whole time. That was pretty much the last of our concerns, not to mention the fact that amazingly my insurance was going to cover it either way and we ended up paying $47. But we just numbly moved forward. It was happening. She flipped on the ultrasound and we saw our baby for the last time, laying peacefully in my womb, no heartbeat. I suppose we could have walked out right then, but it was over for our baby, and we wanted it all to be over so we could move on with our grief. Three hours later, the baby was no longer a part of me and we were on our way home, empty. The D&C was painful and traumatic. It couldn’t have taken long, but it felt like forever. The physical pain was a distraction, but so inconsequential to this pain I was positive was going to be lifelong.

Our terrible limbo was over, but this was only the beginning of our suffering. I write this now almost a year out from the nightmare, with a baby girl who appears to be healthy kicking in my belly, but the intervening months–and subsequent bonus chemical pregnancy just to show how very cruel life can be–have changed me forever. I will never have the innocence of getting pregnant and assuming I’m going to have a baby. I can still place myself right back in the pain and terror of the slog of grief.


again. my spirit, that is.

its one of those days where i have to consciously push against the gravitational pull of grief.

it has been a week since T left. it has been almost ten months since i was pregnant with my babies

by accident i typed ‘ten weeks,’ realized that it has been so much longer than that and just crumbled.

where did all the time go?

i have never been prepared to not realize my goals or get where i want to be in life. i am intelligent and capable. i am kind and helpful. i go over and above in almost every exchange and interaction.

but none of that means anything, and failure could be here to stay.

i feel very alone, and not because T isn’t here, i have felt this way even while in his arms.

i’m not the person i thought i would grow up to be and i’m not sure how to live as the substitution