Anencephaly Awareness Month: Eva

Today I'm sharing Eva with you! Eva is the daughter of Sadee and Thomas Carney. I "met" Sadee in an anencephaly group on Facebook. We instantly connected, and are in constant contact through messenger with each other. It's crazy how our lives can be impacted by someone we don't even know in person, but I know that Sadee would agree when I say that I'm so thankful our paths have crossed. Please keep the Carney family in your prayers as they prepare to meet their sweet baby girl very soon. If you want to follow along with Eva's story, you can visit Sadee's blog, Eva Ever After. 

How was your baby diagnosed? (how far along were you, did you get a second opinion, etc)

We went in for our 20 week anatomy scan with our new doctor. We had already met with our new doctor and then we were sent to ultrasound, our doctor did not attend but was later called back in to give us the diagnosis. She then recommended we go see the maternal fetal medicine specialist (the only one in the state-and almost 7 hours away). We went the following morning where he told us the extent of her diagnosis and some more they didn't tell us the day before.

What was your reaction to the diagnosis? Your husband’s reaction?

When Kerri (our Ultrasound tech) told us she would be right back, my heart froze. I started to panic. My husband was trying to keep me calm and telling me all was okay, that maybe she was new (she wasn't-20 years of experience). Moments later our doctor came in and used the word 'acrania'. I was stumped, thinking that it wasn't too serious until she mentioned 'fatal'. That was the moment I just broke. My husband seemed to be in shock, we just couldn't believe what we were hearing or seeing. It was the worst news we had ever heard.

How did your other children react?

We have a 2 year old boy and a 3 year old girl. We had a child grief counselor come help us tell our kids. After being in the car/doctors for basically the past 24 hours they didn't pay too close of attention. Since then we talk about it regularly. Our daughter was so excited to have a baby in the family. She no longer expresses that joy because she knows her sister is going to die. It is the hardest thing to see that excitement that once was there is gone. Sometimes she gets confused and thinks I am going to die along with her sister because she is inside of me, so we have had some separation anxiety. Its been hard. But, I love the innocence of children, they know she will be safe and happy in Heaven.

Why did you choose to carry to term?

This was a hard decision. I am a firm believer of pro-life. BUT now I also say, your uterus your decision. NOBODY can tell you which decision is best, because each 'plan' still is hard. We decided we wanted to carry to term to get the chance to meet her, even for a brief time. We also wanted to donate organs so no other parent had to feel the pain of loosing a child. Unfortunately, our hospital does not harvest organs. So we are just going to enjoy the time we get with our baby.

What was your favorite part of being pregnant?

Eva is so active. So active I thought something was wrong because she never sits still. She rolls and flips like crazy. I love it. I love that my kids and husband get to know who Eva is by seeing my belly move. I will miss it terribly when she is gone.

When was your baby born? (Or when are they due?) Did you have c-section or natural birth? How long did she live?

We are so hopeful we get to meet Eva and spend some time with her. We are due June 16th (2 days after our wedding anniversary) but are inducing on June 1st. We are doing a vaginal water birth so, crossing my fingers we are able to do so. If she doesn't make it through delivery, I know she lived such a happy life in the womb and felt nothing but the utmost love from us.

What was your favorite part of meeting your baby?

I have yet to experience this but I can't wait to see what she looks like, and if she looks like my daughter and son did when they were born. And of course for them to meet her.

What is your favorite keepsake?

We have a lamb that we use to represent Eva (something recommended by the child grief counselor). This lamb is apart of our family. When my kids are reading or playing, they will go grab the lamb to give her a hug and read with her. It brings a smile to my face each time because we know Eva to be a source of comfort.

Did you consider/were you able to donate organs for transplant/research?

We searched and were even planning on delivering in a different state with more options. BUT based on Eva having anencephaly and other genetic issues we are yet to diagnose, we are unable to. We have come to terms and are okay with this decision

Did you donate your breast milk? How much did you donate? Where did you donate?

I have mixed feelings about this. I breastfed my two other kids and when I found out we were pregnant I was so elated I would be able to breast feed again. Im still on the fence about it but will most likely let my milk dry out. Just due to not having the best medical system where I live and I just want to heal. Its hard to deny others who need it when I could so willingly give, and who knows it could be so theraputic. Time will tell but its definetly on my mind a lot.

How do you incorporate your baby into your family’s current lives?

When we go do important things we take our Eva lamb with us. She sits in a special place in our living room where we can always see her.

Would you change anything/do you have any regrets?

Not any regrets, I mean as a mom you always think you do something wrong, so I try to go back and see if I did anything personally (even though I know I didn't). I am glad we did decide to carry to term, because we did get to know who our baby would have been. And that is a blessing within itself.

How do you want your baby to be remembered?

I want her to be recognized as a member of our family. The hardest part is going to be answering 'how many kids do you have' because I want to include her yet don't know how to answer the follow up of 'where is the other one' etc. I would never say she is not my child. I hope my family members still view her as a person too. My religion is so important and I know one day I will get to raise her from infancy. So even though I don't get that chance now, someday I will. I look forward to that.

Is there anything else you want us to know about your baby/this experience/anencephaly?

Not necessarily wanting to know, but how to approach someone who is in the situation. Yes, it sucks. The more you avoid talking to that person the more they feel hurt by the avoidance. Just hug them and let them express their grief how they need. As hard as it is to say, I am grateful I am going through this, it has strengthened my bond with my family and kids, and has shown me just what Eva's life has done simply with the ripple effect. Those who are going through this, I am sorry. It really sucks, but you learn so much about yourself and others along the way. Our babies are just too perfect for this world and we are so lucky they have chosen us to carry them. 

I hope you guys have enjoyed learning more about Eva and her family, I know that I have. Sadee also wanted me to share this video with you. It's entitled "Until Heaven" by Sarah Ann.