Go to content; Go to main menu; Go to languages.

Brigid Valentine


Brigid Valentine, baby with anencephaly

I am hoping our story could bring hope to other parents who are reading through these stories in the wake of their diagnosis. I'm so sorry that you find yourself here.

The short version of our story is that our daughter was diagnosed with exencephaly at 19 weeks. We decided to pursue a home birth. My water broke at 36 weeks, and Brigid was born 11 hours later at home with no complications. She lived for 3.5 hours, and let out little battle cries during her life. She met her big sister and was held for her whole life.

The long version of our story:

Our first baby was born at home, and we had been pursuing the same path with our second. In order to find out our baby's gender we went for a "looksee vanity ultrasound" at 18 weeks. You have to sign a waiver agreeing that if the tech sees anything unusual, the ultrasound will end and they won't tell you why. This is because it is not a medical ultrasound.

Our ultrasound started at 2:00, and at 2:02 our ultrasound was ended because the tech saw something.

She was not allowed to tell us what.

Over the next several days we went through a series of phone calls and appointments in an attempt to find out what was wrong with our baby. It was during our third ultrasound that we found out our baby girl had exencephaly, which is a precursor to anencephaly.

I knew what anencephaly was, but I did not know then that it is considered incompatible with life. I remember wondering what surgeries she might need when the tech said something about how these babies were usually otherwise perfect, but that they are just not meant for this world.

I knew it in my heart then.

She left us then to get the doctor, and I remember warning John that I thought Brigid would probably not live. The doctor then confirmed everything that the tech had told us, specifically stating that she wouldn't live for long. They left us alone for a while and we just cried together.

That first weekend was really rough. My nephew was getting married that evening, I was in a wedding on Saturday, and my father-in-law's birthday celebration was on Saturday. We did not want to cloud any of these events with our sad news, but we did a poor job of holding in our sadness.

The first free moment I had after diagnosis, I remember praying that Brigid would have visible red hair. My husband and I are both redheaded, as is our firstborn, and this one thing would mark her as ours.

My grief was intense the first few weeks.

I was terrified to tell friends and family. My pregnancy had gone from the happiest thing I could think of to the saddest, and I was devastated. For weeks I couldn't think or talk about it without crying. Family and friends jumped through hoops for me so that I wouldn't have to talk about it unless I brought it up.

My husband, on the other hand, jumped in to action. Our two priests were in the know immediately, a casket was ordered, cemeteries and funeral homes were researched, etc.

We had decided to continue to pursue a home birth for a host of reasons, although I did have some reservations. One of my concerns about having a home birth was the fear that labor might never start (an eccentricity of babies with anencephaly), and that I would have to transfer care in order to be induced. Other fears surfaced as we continued care with our midwife. Hospice would be unable to accept Brigid as a client unless a slew of conditions were met.

Having a home birth with a fatal diagnosis is almost unheard of here in the US, and so we really had to make our own way.

My water broke right after work one Friday afternoon. We were 36weeks + 1 day, and I could not believe that my water had broken. We weren't completely prepared, but we whipped together what we could in the few hours we had before labor intensified.

It was extremely snowy that evening, and most of our support team was coming from far away. I was in the birth pool laboring hard as our team started to arrive.

We knew that John was going to perform an emergency baptism as soon as she was born. As the moment neared, I turned toward John and we prepared for how it would happen. She came out, and I lifted her up and tipped her back. John quickly baptized her, and I pulled her towards me.

Our midwife Shannon checked, and Brigid still had a heartbeat.

She still hadn't breathed, despite my attentions. I believed at that moment that she would pass very quickly, but my little girl suddenly started taking gasping breaths.

Because she was breathing, we had hope that she might live for a little while yet. I got out of the pool and moved to the couch. As we were making the shift, Brigid let out a little battle cry. All of us were overjoyed at her angry little yell.

For a while we lay together on the couch and just soaked her in. These are my favorite memories of her short life.

We have a few little videos of her angry little countenance, a few of her taking breaths, and even one of her battle cries.

Our priest arrived and chrismated her (the last step in completing her baptism, similar to Catholic confirmation), and my midwives put us to bed.

Brigid laid on my chest, and we dozed a bit. I kept marveling at how soft her skin was. I checked her frequently, and at 5:30 I couldn't rouse her. John checked her and confirmed that she didn't have a heartbeat.

Brigid was prepared at home for burial. She was never in a morgue or a funeral home; she went from our home, to the church, to the cemetery.

I had prayed that she would have visible red hair, and she did. Brigid had quite a bit of red hair that was darker than her sister's and lighter than John's.

Everyone says it, and it seems counterintuitive, but we have been really blessed to have had Brigid. We love her and miss her desperately.




Last updated March 29, 2019