It was our choice. To us, it was the only choice.

Feb 19, 2021 | Diagnoses, Hydrocephalus, Induction/L&D, Neural Tube Defects, Stories

It was our choice. To us, it was the only choice.

By Erin

It has been almost two weeks since we had to end our sweet baby’s life. I hate saying it like that, but to me, that’s what we did. Even though it was the right choice. It was our choice. To us, it was the only choice. I’m 32, my spouse is 30. When we found out we were pregnant in September of 2019 we felt scared, excited, and nervous. But we never thought anything could go wrong and soon we were just overjoyed and elated.


Telling our family and friends

We told our parents and siblings early on. We found out at 7 weeks and told everybody about our pregnancy. We’re young, have no genetic issues, nothing to suggest there would be any complications. No warning signs. Little did we know, there never really are warning signs.


Our early OB appointments

We found our OB through an online search. When we arrived for our first appointment we fell in love with her immediately. We “clicked.” Tyler and I really thought she was heaven-sent. As the weeks went on, we sent out ultrasound pictures to family and friends. We got bloodwork back and all was looking good. Negative for Down’s and spina bifida. The ultrasounds all looked good. We found out we were having a boy. I had prayed for and wanted a girl so bad, but the day we found out, I didn’t care at all. I was excited for a healthy baby boy. We were happy and excited for a healthy baby boy. Our 20-week anatomy scan came back great. He was measuring normal. On-time. Everything looking good.


An unexpected diagnosis

Two weeks later I went to my PCP for a routine visit for a refill on a prescription. When checking vitals, my doctor noticed my blood pressure was high. Very high. She asked about stressors/history/etc. Then she sent me to the next building over to my OB. My blood pressure had gone down by then, but we had an ultrasound done anyway. When I met with my OB after the ultrasound she said she noticed fluid on Hunter’s brain. A “significant” amount. My OB referred me to a Maternal-Fetal Medicine (MFM) specialist. This was a Monday, and we got an appointment with the MFM for Wednesday.


A second opinion

At the MFM appointment, we had an extensive ultrasound and waited a bit while the specialist reviewed the results. She confirmed the fluid on the brain and threw out phrases such as “aqueductal stenosis,” “hydrocephalus,” and a few other things I can’t remember. I remember her asking if we wanted to terminate. We were caught off guard by this because Tyler and I had discussed some of this prior and we decided we would fight this head-on and deal with it. The specialist just kept spouting more information: some percentages of a normal life and the life expectancy, etc., etc. We knew something bad was happening to our baby. I don’t know how we held it together in that room. Because we wanted to exhaust all our options before facing this termination talk again, she referred us downtown to a children’s hospital.


More second opinions

Our appointment at the Fetal Center was that Friday, two days later. We had another extensive ultrasound, taking measurements, etc. The doctor reviewed everything and then came to speak with us. He ushered us into an office with a table, 4 chairs, a dry erase board, and a model of a brain on the table. He threw out the same words as the previous specialist. We learned more about these brain ventricles, where they’re located, and how they were “supposed” to work. Our baby’s ventricles were not working. A ventricle was “kinked” causing fluid to build up. Nothing could be done in utero to correct this. In fact, he told us, all studies and research attempted in utero had failed horribly.

Pregnancy termination was once again brought up after we had all of the medical information about Hunter’s liquid-filled brain. Not only would he for sure come preterm, but he would also need immediate brain surgery if he came out alive. And he was putting my life at risk. The doctor left and said the genetic counselor would see us shortly. As soon as the door closed behind him Tyler and I just stared at each other. Incredulous. Before that day, we had hope. Before that ultrasound, we still had hope.


Making the decision to terminate the pregnancy

Before we even said a word to each other, we knew we couldn’t continue with this pregnancy. Our previous termination discussions were thrown out the window. There was no way we could have a baby who would, at best, live in a vegetative state. He would 100% not make it to term. If he did, he would have to have immediate surgery. We couldn’t let our little man have that sort of life, we couldn’t have our little man in that kind of pain.

The answer was clear. We made the decision before the genetic counselor even came in the room.

As the genetic counselor spoke to us, we now only focused on the amniocentesis I was about to have. What was the purpose? Was I a carrier of this L1CAM gene that hurt our baby? How did this happen? I got the amnio and I’m so glad my partner Tyler was allowed in the room with me. We got the information about termination. Under the law in Texas, the abortion limit is 22 weeks. That Friday, that day we found all of this out, I was 23 weeks. Another decision to make. How were we going to do this? The doctors set us up with a late-term termination clinic in New Mexico. We made an appointment that Friday for the next Tuesday. From start to finish about finding out about our son was one fucking week.


The clinic, the procedure

The following week, we went to the clinic in New Mexico. I was prepared for labor and delivery. That Thursday I went into labor, birthed my dead son, and finished with a D&C. It was the worst I’ve ever been mentally in my life. Luckily I have an amazing support system in Tyler and my family.


And now

This Thursday will be two weeks since I birthed my dead son. I can’t get the feeling of the doctor breaking my water out of my mind or body. Feeling Hunter come out was physical relief and emotional torture. Thank you for reading my story. I’m trying to make it. I went to a counselor* and plan on continuing to see her. At this point I’m trying to make it each minute, each hour, each day.

*(Click here for Ending a Wanted Pregnancy’s list of recommended helplines and counselors)


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