I Just Miss Her

Mar 19, 2015 | D&E, Hydrocephalus, Neural Tube Defects, Spina Bifida, Stories

I don’t regret our decision. But I am so heartbroken that we were forced to make it.


It took almost two years to conceive our first child, Cade. We had him after seven rounds of clomid and one IUI. I got pregnant with Elise the month after I stopped nursing Cade, and the first time after my period came back. It was so easy. I was considered very low risk for everything and didn’t have my first ultrasound until 20 weeks. I was nervous, but also basking in how “normal” this pregnancy was. I got to celebrate and get nervous about how close in age my children would be (22 months).

I was a lot sicker than I was with Cade, and I even had toenails fall off at about 8 weeks (weird) but I figured this was normal for second pregnancies.

At the 20-week ultrasound the tech told us our baby was a girl, and then showed us abnormalities in the brain and spinal cord and clubbed feet, but also said it “wasn’t spina bifida.” That made no sense to me (I’m a physical therapist with some knowledge of this) and through the following long, long night, I think I just knew that this pregnancy would end. I slept about two hours. My husband blocked it out and slept for eight hours straight. I was grateful that one of us could sleep.

Early the next morning we saw a perinatologist and basically all our fears were confirmed, plus some. She had a myelomeningocele at L2 and L3, and severe hydrocephalus with the Arnold chiari malformation. They couldn’t see her cerebellum, and the perinatologist said “Well, I think that’s her corpus callosum.”

Basically she would never walk, and she’d lack bowel and bladder control and almost assuredly have severe cognitive limitations. The degree of hydrocephalus was bad in this stage of pregnancy and would most likely worsen. I asked about her lifespan and the doctor couldn’t answer. It was a series of ifs. If she survived the pregnancy, If she survived the birth, If she survived the neurosurgeries after birth. And If she did survive all that she would be in a lot of pain, and a lot of confusion during her likely shortened life.

My husband looked at me after the doctor explained all this, and his face just crumpled as he sobbed, “We have to let her go.”

That was a Thursday. I was to undergo an abortion at 21 weeks, on the following Tuesday. I asked if she would feel pain. My (wonderful) doctor assured us she would feel no pain. I asked if delivering her would be better for her. My husband wanted to hold her, and I said I would deliver her for him if he wanted. My doctor said for her it didn’t matter, but that for me the rate of complications and risk for future pregnancies was less with a D&E than labor and delivery.

Then we were informed that my insurance provider is a Catholic company and does not cover any terminations unless the condition is clearly “not compatible with life” like trisomy 18 or anencephaly. I couldn’t even process that information at the time. It was unlikely she had trisomy 18, and to confirm that would take another 7 to 10 business days. And even if terminating the pregnancy did get covered, the other hospitals (where the labor and delivery would be performed) were out of network with my insurance, and there would be no coverage anyway.

So, between the insurance issues and severity of her condition, D&E abortion became the only feasible option.

The earliest we could start the procedure was the following Tuesday. I wondered how I could get through the next four days. But it actually became a blessing. I said goodbye. I held Cade against my stomach as I read books to him before bed and felt her kicking him. I tried to soak in that time with my two children together.

The following Monday I called our insurance company and was helped by a wonderful woman who sighed, “Oh honey!” and checked in with me twice a day. She filed an exception and got the procedure covered by Wednesday. It meant the world to me, which surprised me. Yes, the $3,000 for the procedure was nothing to scoff at, but more than that I felt like it meant the insurance company agreed that I needed to do this.

On Tuesday and Wednesday, they inserted seaweed sticks (laminaria) to dilate my cervix. I felt as time went on, she was moving less and less. I wonder if this was in my head. There were a couple protesters outside of the abortion clinic each day, which we found ironic. I think I wanted to protest, too.

Early Thursday morning they put me under general anesthesia and took her. She was just gone. I came out of the anesthesia fast, earlier than they expected, and my husband wasn’t there. The doctor who performed the surgery said the lesion on her back was huge and that her head was huge with swelling, and that we made the right decision. In my post-anesthesia haze I asked her to say it again. She did. Then I asked her to repeat it to my husband when he returned. She did.

I started getting the shakes and was nauseated. I felt so, so empty.

Three days later my milk started coming in. My husband bound my boobs with ace wrap, and got me cabbage leaves to put on them. I drank sage tea and I put frozen baby teethers in my bra to help with the engorgement.

It’s been two weeks now since the procedure. I still have milk, but it isn’t as bad. My stomach is basically flat again but the skin is loose. With clothes on its already like I was never pregnant.

I miss her. It’s hard to eat. I take an anti-anxiety medication to sleep through the night. It helps to be with my son, to go to the park, to see his happy baby face and get his hugs. It helped to go back to work and get a break from thinking about this and focus on other people’s problems. My husband seems like he is healing from it faster than I am. I hope it gets easier when I don’t have milk any longer.

I don’t regret our decision. But I am so heartbroken that we were forced to make it.

People ask if we want to try have another child. I think yes, but I know I have to prepare myself for what that means: waiting. Waiting for genetic testing results that were done on Elise, waiting the recommended three months minimum before we start trying, waiting through my long cycles (hey maybe I could get pregnant again right away!), waiting through the sickness of a first trimester, and most importantly waiting for that specialist 16 week ultrasound to see if everything is okay. I think we can do it. We have amazing family and friends to help. We have a strong marriage. But that will be another story. For now, we are just trying to heal.

We will spread Elise’s ashes from a hike in the Columbia River Gorge on April 3rd. I miss her. If I focus on the reality of her broken body and brain, instead of the healthy baby that I thought I had, I can accept what has happened more easily. But no matter what, I just miss her.

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