Things I Wish I Had Known When My Daughter Was Stillborn. This Is My Story.

If you are a long-time reader, you know who I am. My name is Bre, and I am the face of stillbirth. On April 10, 2013, our sweet 20-week gestation daughter Aubrey was born sleeping. This is a day that changed my life for eternity. A day that changed me forever. Changed my husband forever. We are not the same people we were before this happened. I wanted to share my story again because it had been so long since I last spoke of it. I want to let my new readers know they are not alone.

As for the backstory, very early on in our pregnancy, we were told our daughter was going to die and we were told we needed to abort. This is something that I could not do. We were told she had no chance at life and carrying her would be painful for me emotionally. I started blogging our journey when we found out. We went to several follow-up ultrasounds and we were told she had Anencephaly.

Anencephaly is a condition that prevents the normal development of the brain and the bones of the skull. This condition results when a structure called the neural tube fails to close during the first few weeks of embryonic development. The neural tube is a layer of cells that ultimately develops into the brain and spinal cord. Because anencephaly is caused by abnormalities of the neural tube, it is classified as a neural tube defect (NTD).If the neural tube fails to close properly, the developing brain and spinal cord are exposed to the amniotic fluid that surrounds the fetus. This exposure causes the nervous system tissue to break down (degenerate). As a result, people with anencephaly are missing large parts of the brain called the cerebrum and cerebellum. These brain regions are necessary for thinking, hearing, vision, emotion, and coordinating movement. The bones of the skull are also missing or incompletely formed. Almost all babies with anencephaly die before birth or within a few hours or days after birth.

To put this in perspective- She did not have skull bone around her brain and her head did not close from the forehead to the neck. In my ultrasound below, you can see what I am talking about. In a normal ultrasound, there would be a thin white line around the skull in a perfect round shape. 

We were asked again if we wanted to abort and we said no. We wanted to meet her. We joined support groups, we asked questions and we found so many couples that were in the same situation that we were in. We even MOURNED their babies when they had them because we were all so close-knit. We went on to our gender ultrasound finding out it was a girl. Then I went into early labor at 20 weeks and had her. I had a history of pre-term labor, but because of her condition, they did not stop labor. 

That morning, after 24 hours of labor, Aubrey Elizabeth Brown was born sleeping. She was the most beautiful, fragile and perfect baby. When we found out she had this condition, I was terrified after googling and seeing other babies in our support groups with this condition. Oddly, it did NOT bother us. We looked past it. We did what normal couples do- counted her toes, talked about who she looked like. Kissed her nose. The nurse even put the smallest gown on her. She had a bonnet. Oh, my she looked so sweet. I did not realize how formed she would be for 20 weeks. She looked like a micro-preemie. Her skin was so red because of her age. Everything about her was so well formed. Her feet were big like daddy, her tiny fingers were perfect. She had my nose and Her little lips were so sweet.

We were able to spend the whole day with her until we had to call the funeral home. Watching them walk out with her was the most devastating. We decided to have her cremated, and we did so. We have the perfect urn for her. A baby shoe. I have a necklace with her ashes in it that I wear on my neck too. 

There are some things that I wish I had known when I had her. There are things that I wish I had known. You can't even begin to prepare for this.  Things that I do not wish anyone to go through, but women DO go through these and it is time to talk about it! If you are facing the situation that we did, and you decided to carry, read this!

• You will feel like your marriage is failing. Here 4+ years later, I am surprised my husband and I made it. I am surprised we are still married. According to a study found, compared with couples who had successful pregnancies, those who had a miscarriage were 22 percent more likely to break up, and those who experienced a stillbirth were 40 percent more likely to do so. We fought and took our anger out on each other constantly. STAY STRONG for each other. HE or she WILL want to grieve alone. And THAT IS OKAY. Give them space.

• You will regret not taking photos. Some people find it taboo or morbid. I do not at all. She was our baby. I refuse to post a full photo of her, because sadly, the internet can be cruel, but we CHERISH these. Please, take photos. Take moments to hold and snuggle your baby. You do not want to go through life wondering "what if".

• You will go through the stages of grief. Denial, Anger, Depression, Bargaining (struggling to find meaning and reaching out to others to share your story), Acceptance. I was stuck in anger for an entire year. I hated everyone. I am finally, four + years later, at acceptance. 

• Triggers will happen often. I often smell scents or see babies and pregnant people and it can trigger flashbacks. During the first year, I had breakdowns in the middle of the store and I had to leave my buggy and run out crying. 

• Don't be afraid to talk about your baby. I would often get asked how many kids I had and would hold back mentioning Aubrey because I did not want an awkward conversation. One day I said screw it and mentioned her. Little did I know, the lady had also lost her baby that same month I lost Aubrey. I talk about her when I can. But holding back IS NORMAL. You will learn to open up over time. 

• There will be days, maybe weeks you stay in bed crying and not showering for days at a time. It will happen. No one talks about it. It happened to me. That is the depression part and it is NORMAL to go through. 

• Everyone always talks about mom, and asks how she is doing. They do not mention dad as much.  I often got the "How are you?" but there were times no one asked about him. Make him involved. There were several occasions I diverted the conversation toward him. He wanted to feel involved. He wanted people to ask how he was doing. 

My husband was sent the tag and bear above, it is one of his cherished possessions too! 

• It is okay to have keepsakes. We have a memory box full of items. I even have her umbilical stump in a ziplock baggie. When going through our box tonight, I found the piece of paper we used when we found out we were pregnant. We were discussing baby names! It is okay to keep all of those memories! We open our box every anniversary. 

• You WILL want to punch those in the face that say "She/he is in a better place. IT is normal. I still get those comments. The worst one has been "At least you are still young enough to have another child". I want my baby. Mine, the one I lost. Who are you to say that to me? It is okay to say how you feel to someone that offended you with a stupid comment. I do wish I had spoken up more.

I am crying writing this post, so I have to end it now, but I wanted to share my thoughts and let you know that if you are going through a loss, you are not alone. A loss is a loss, not matter how far in your pregnancy you were/are. I am an email away. Thank you for reading.