Aveline Hope

*Note this post as been updated a few years after it was originally posted to share more details about Aveline's diagnosis that I was not able to bring myself to share that first year.

This year I have taken a lot of time off work. I expected to do that but for a different reason. This year I expected to be raising our newborn daughter, not grieving her loss. I have had to show myself grace for not being able to juggle everything I used to. I have had to take time to process and grieve the loss of my daughter and realize its okay to not be okay, to fall apart.

I have been wanting to write about her for a while but I just wasn't ready until now. (trigger warning there are a few more photos at the end)

Last year on the first day of spring we found out we were having our first child, and we were so excited. Every doctors visit it was so cool hearing her heart beat and eventually feel her kick. I couldn't wait to hold and raise her. Jason and I found out at my 20 week ultrasound that we were going to have a little girl and we were so excited. We would have been happy either way but we were hoping for a girl.  We were so giddy. However 30 minutes later everything changed and my world stopped.

We had our appointment with the midwife after the ultrasound and we were so excited, but she was quiet. She said "there is no easy way to say this, but there is a problem with your baby." My heart dropped. The words that is every parents worst nightmare. She started talking about around the babies head and face, My brain goes into overdrive and my immediate thought was our baby has downs syndrome . And while it wouldn't be an easy road it would be okay. I have a sister with downs syndrome and she is the sweetest person on earth, we can get through this. I only got a couple of seconds down this train of thought before she said "your baby has a fatal birth defect called Anencephaly, there is no treatment".

 Everything slowed way down, did I hear that right? Fatal, as in she will die? I couldn’t fully  process what this meant. She then went on to tell us that Anencephaly is a neural tube defect where the brain doesn’t develop over the brain stem. Basically her brain didn't develop and  neither did the back of her skull. 

She then told us that Babies with this have to be induced and they typically don’t live more than a few minutes or hours after birth, if they survive birth at all, it rare cases a couple of days. One case a baby lived for 3 months. 

I could barely focus on what the next steps where. She said that she was scheduling an appointment with a genetic counselor and a OB specialist. She said we had 3 options: 1. we could do a DNC (surgical abortion, which I just couldn't do. Please know there is no judgment if someone else chose this route), 2. induce labor early (they stop the babies heart first, which I couldn't agree to), or 3. carrying the baby to term and induce and lose her then.

This couldn’t be real, this is the stuff that happens to other people, things you hear on the news, this shouldn’t be happening to us. How was this possible? These and so many other thoughts were running though my head. I was trying so hard not to cry. The emotions started flooding in even more and I started crying more, finally I just wanted to get out of there. There are so many emotions, shock, depression, anger, confusion, sadness and so many more. We both couldn’t stop crying. In this moment the hardest part is that we’re going to have to make a choice to end her life, and it’s so hard. Because of the state laws and how far along i was we had less than 2 weeks to make a decision. The next week had way to much to share in this post so I will try to summarize.

After a lot of prayer, talking to our pastor at length, talking to our families and some close friends and church members. We called the hospital to tell them we were leaning got towards early delivery but we had some concerns. We wanted another ultrasound done and  to get the appointments scheduled in case we go that route. We had several appointments, several second options and extra scans to make sure there wasn't a mistake. I also told them, I would not do a DNC, I didn't think I could survive carrying to term, worrying about being suicidal and we felt that early delivery was the" best" option out of the 3. If I delivered early or carried to term the outcome would be the same, I would have to be induced either way, and we would lose her either way, and no matter when I delivered there would be no guarantee she would survive labor. However, my main problem with early delivery is I couldn't let them stop my babies heart, I just couldn't do that. The Dr resisted at first because it is hospital policy, We prayed that they would change their minds. In the middle of all of this heartache we had a little miracle. They made an acceptation, they agreed to induce without stopping her heart, giving me a very slim, but a chance to meet her. The DR called as back and said we could schedule it Tuesday, and we could ultrasound on Monday. When we called I was really at peace and had excepted that doing an early labor was the right thing. However as soon as I got off the phone I felt very panicked. Tuesday, 4 days away was too soon. How could I have a baby in 4 days? I was so so scared and just started sobbing. 

I was terrified of going into labor when I thought she was healthy and cried then. The comfort I had was I had 4ish months to prepare, to research, to get used to the idea. Now 4 months suddenly changed to 4 days. I was so confused if maybe we were doing the wrong thing. Was I second guessing our decision or was I just scared about what we were going to go through and very soon? After a lot of prayer and talking I realized it was just far of labor and losing her, but not of the decision we were making. Even though we were heartbroken, I felt God is leading us and that this was the choice we were supposed to make.  We were heartbroken but at peace.

The day before I was induced our parents few up to be with us. We had a final appointment, a final scan to see if there had been a miracle, an answer to that prayer, a chance that all other scans had been wrong. But there was no change. I will not go into the rest of details of that day and delivery for now. I delivered our daughter on July 13, 2021 at 20 weeks and 6 days weeks old, she weighed 8.8oz. Aveline Hope Barnett lived for 5 1/5 precious hours. No one expected her to live through labor, especially at her age and with her condition and birth defect. The fact that we got that much time with her under the circumstances was a little miracle.

Even though it was not nearly long enough, I’m so grateful for those moments, getting to see her heart beating and taking little breaths, feeling her lightly squeeze my pinky with her tiny hand. It is the hardest and most devastating thing we have ever been through. Its hard to describe how holding her was one of the happiest moments of my life, then to have it follow with such heartbreak. We are thankful for all of our family and friends who have helped and are helping us through this difficult time.

This is not how we imagined things would go, it’s not what we wanted, it’s doesn’t seem fair and it hurts so much. However though all of this pain, this grief, this anger, we have seen God working, which sounds crazy with everything that has happened. But we have seen Him, we have seen little miracles, not the one we wanted but they have been there. He has has brought us closer together and has been carrying us every step of the way, giving us peace, bringing us comfort, putting the right people in our lives at the right time and without Him I don’t know how we would get though this. With Him we have this hope, hope that we will one day when He returns we will get to be with Him and we will get to hold our little girl again.

It amazing to me how different it is going through child loss. So many go through it and I sympathized. However being the one going through it changes everything. I didn't realize how many people have gone through something similar, because its not talked about. People don't know what to say, I don't hold that against them because I used to not know what to say either. For those who want to say something but are afraid of causing more pain, 9/10 times a grieving parent is going to be glad you asked. They might not be in a place where they can talk about it but knowing some cares makes the biggest difference. Small things like someone asking what my child's name was means more than I can say.

There are still so many hard days, but they are becoming fewer, I'm starting to smile more and look forward to the days ahead, not dreading them. Its hard to believe its been about 10 months. When every thing happened I was told time heals, I had a hard time believe that back then. However it with Gods help, does. It does not erase what happened but it helps lessen the pain. Now when I think of her I don't burst into tears every time. Often I smile and think of the little girl who made me a mom.