Anencephaly Awareness Month: Olivia

Today I have the story of Olivia, whose mommy Cynthia was the first mom I talked to once finding out our diagnosis. (Thank you to those of you that connected us!) Cynthia has shown me so many things about living with the grief and heartache in the long run. Her and her husband went on to have three more beautiful girls, making five here on Earth and Olivia in Heaven. I hope you are as touched by her story as I have been. 

Olivia's sisters, before her youngest sister Emmie was born, with their Molly Bear to represent Olivia. 

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

-I went in for a routine ultrasound at 12 weeks.  The doctor's heart rate Doppler was broken so we just needed to confirm a heartbeat.  The ultrasound was absolutely perfect.  She was moving all over the place, sucked her thumb and measured right on track.  As soon as it was time to scan the head, the mood of the room changed.  I knew something was wrong but I had no idea how much our lives were about to change.  I had a followup appointment a week later with a specialist but we already knew that the initial diagnosis was correct.

What was your reaction to the diagnosis?

-When we were first told, I was in shock and devastated.  I had never heard of anencephaly and had no idea what we were supposed to do.  Our doctor told us that we could continue the pregnancy and see and hold our baby.  I thought he was insane.  I couldn't imagine wanting to carry a baby, knowing that if we made it through birth, she would die in my arms.  By the next morning, my mind had changed.  I knew I was going to continue the pregnancy, to have as much time with her as we could get.

How did your other children react?

-Hannah and Makayla were 2 & 3 at the time.  I was surprised at how much they understood at such a young age.  They were very sad and confused.  They couldn't understand why their friends brothers and sisters got to come home and their sister wouldn't or why some of their friends moms had 2 babies come home and their sister was going to heaven.  Olivia's life gave us the opportunity to share with them about the beauty of heaven and the hope of seeing her again.  In the end, they were such proud big sisters.  They would tell everyone about their sister in heaven, even cashiers that we had never met.  Kids are so awesome, they have no concerns about making things awkward, they just share their joy.

Why did you choose to carry to term?

-Even though I couldn't imagine continuing the pregnancy initially, once the shock wore off, I couldn't imagine terminating.  We wanted this baby, we had prayed for her and I just wanted time with her no matter how much or little we would be given.  Her life was just as important to us as our other girls, if one of them had a terminal illness we wouldn't end their life the next day.  To me, Olivia was not different, every minute of her life was worth living and it was not up to me to change God's plan for her life.

What was your favorite part of being pregnant?

-She moved all the time, it's like she was constantly reminding me that she was still here.  And food!  I craved meals late at night so we almost always had 2 dinners.   Pretty much any food I craved, I went for it.  It was my way of letting her have the foods that she would never grow up to taste.

When was your baby born? 

-I went into premature labor at 34 weeks, since we had a fatal diagnosis, there was no intervention to stop labor.  I had a vaginal birth and she lived for 58 minutes.

Favorite part of meeting your baby?

-Finally getting to see and hold her.  In an instant, all of the worries and fears were replaced with love, she was absolutely perfect and beautiful.  We couldn't kiss her and tell her we loved her enough.  One of my favorite things to do with my babies is to take naps with them, I was blessed with the opportunity to take a nap with her in my arms.  It seems like such a small thing but it was a chance to have a "normal" memory with her that I have with all of our girls.

Favorite keepsake?

-Pictures and her hand/footprints.  Sometimes this whole journey seems unreal, having those pieces of her helps bring me back to those moments that I never want to forget.

Organ Donation?

-We had looked into organ donation but could not find much support for infant donations at the time.   She would have had to be born at a certain weight and she was too small.  I wish I had known more about tissue donation at the time.  I think the awareness has dramatically increased over that last 7 years and more information is available to parents facing these situations.

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

-We talk about her, on her birthday we celebrate and do a balloon release, at Christmastime we have a stocking for her.  Her life is intertwined in way that isn't always obvious to others but she is forever a part of us and she will continue to have a place in our family.  We have done fundraisers for Molly Bears and for a pregnancy outreach on her birthday, being able to focus on helping others brings purpose to her life.

Would you change anything?  Do you have regrets?

-I would have been prepared early for the possibility of going into labor early.  I was not prepared at all and did not expect to be in labor when I went to the hospital at 34 weeks.  I would have also taken more pictures. Our photographer didn't answer when we went to the hospital. I am thankful for the few we had gotten but always wish we had more.  My biggest regret is that our older girls did not have a chance to meet her. She was born in the middle of the night,  waking up a 3 & 4 year old at 1:00 in the morning worried us.  We didn't know how much time we would have with her so we made the best decision in the moment.  In hindsight, I wish we would have had them brought up but I remind myself that it was not a decision made lightly.  Having her prematurely changed so many of my plans that I thought would have worked out.

How do you want your baby to be remembered?

-That she was a loved and wanted part of our family.    Her life was short but she was surrounded with unconditional love.

Anything else you want people to know?

-The journey of carrying to term is the most difficult but most beautiful experience of my life.  When you allow God to carry you, you are capable of so much more than you ever believed possible.  I thought my pregnancy would have been the hardest part of this journey but it was just the beginning.  Learning how to live every single day without your child in it is the hardest thing I have ever had to do.  Through it all, there is a lot of sadness but if you can try to find purpose in it, you can find joy in the midst of the pain. In the end, I would do it all over just to have those moments with Olivia again.

If you are going through this, you will feel every range of emotion.  Allow yourself to feel, even the feelings that feel so ugly at the time, the feelings will not always be so raw.

If you love someone who is going through this or that has, don't skip over the hard stuff.  We never forget our babies, a simple "thinking of you" goes long way.  Birthdays, diagnosis day and milestones will ALWAYS bring up a range of emotions.  Whether is been 3 weeks or 50 years, hearing our baby's name spoken is a reminder that we are not alone in this.

Anencephaly Awareness Month: Week 3

Welcome to week three of Anencephaly Awareness Month! I've covered what anencephaly is, and on the occurrence of anencephaly. This week I will cover some causes and risk factors for anencephaly.

I'm going to preface this post by saying that there is no known cause for anencephaly. Even though neural tube defects (including spina bifida) are one of the most common birth defects, so little is known about what truly causes them. Researchers believe that it is a combination of genetic and environmental factors. I was hoping to have some information back today from a researcher at the Duke Molecular Physiology Institute's study "The Hereditary Basis of Neural Tube Defects", but I haven't heard back from her yet. I will definitely let you guys know when she does have the time to get back to me! Until then, you can find some information about their study (which Madison is officially a part of) here. 

One thing that we do know can help reduce the risk of any Neural Tube Defect is Folic Acid. One study found that if women of child bearing age took .4 mg of Folic Acid every day for at least four weeks before getting pregnant, 50-70% of Neural Tube Defects could be prevented. But, I know that a lack of Folic Acid isn't the only reason a baby might get anencephaly. Personally, I was taking a prenatal with Folic Acid for over a year before we became pregnant with Madison. As you can see, Folic Acid isn't the only factor. 

The CDC also reports that babies born to Hispanic mothers are at an increased risk for anencephaly, but the reasons for the increased risk are not well understood.

So much more research is needed to figure out what causes anencephaly so that one day we might be able to prevent any babies dying from this horrible birth defect. If you feel obliged to donate towards the Duke study, contact information may be found below.

Donations can be made online at www.giftrecords.duke.edu. Click on “Make a Gift Now” and then “Make a Credit Card Gift.” Enter amount and then click “Or choose an area” at the bottom. Click on “Still can’t find your designation of choice” and type 3912359 into “Which area of Duke would you like to support?” There is also a field for donors to dedicate the gift.

Or checks can be mailed to:

Duke University Medical Center
NTD Research Fund
300 N. Duke Street
Durham, NC 27701

That's it for Week 3's information! On Thursday I'm sharing Olivia's story, and then next week I'll discuss diagnosis and outcomes.

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.

Anencephaly Awareness Month: Week 2

Thanks for checking in to week two of anencephaly awareness month. Last week I touched on a little background information. This week I'll be talking about the occurrence of anencephaly.

The CDC estimates that about 3 in every 10,000 pregnancies in the United States will be affected by anencephaly. Personally, I think that that number should actually be higher. I would be very interested to know what criteria was used to determine that number, as there are a large number of people who terminate their pregnancy after receiving a diagnosis of anencephaly, so those pregnancies might not be reported in these numbers. I think there are so many more people who are carrying their babies to term now than there has ever been in the past, so I wouldn't be surprised if that number actually rose if the CDC investigated that matter again. 

Anencephaly is more common in girls than boys. One study noted a 3:2 ratio of girls to boys affected with anencephaly. Personally, I have definitely seen this diagnosis more in females than males. Obviously with our daughter, Eric's cousin Kiley Jo, and then two guests I will have on my blog in the next two weeks both have daughters that have anencephaly. 

In most cases, anencephaly is an isolated occurrence and doesn't usually occur more than once in the same family. The rate of recurrence for a woman who has already had a child with anencephaly is about 4%.   

Next week, I will be touching on some causes/risk factors for anencephaly. I have been in touch with a researcher at Duke University conducting a study on neural tube defects, and have sent her a list of some questions I wanted her to address (though going through all of this information I can already think of so many more questions than what I've already sent her. Maybe next year I can include more questions!). I'm hoping to include that information in my blog post next Monday, but if she doesn't get back to me by then I will post the info as soon as I get it!

And just as a PSA, Monday the 15th is Anencephaly Awareness Day! I'll be wearing green to help spread awareness, and I'd love it if you would join me!

I'll be back Thursday with the story of Eva, so stay tuned! 

Anencephaly Awareness Month: Madison

I mentioned on Monday that I was going to be sharing some personal stories from other women that I've met during this journey. Today, I'm sharing the story of our daughter, Madison Nichole Schackmann. 

How was your baby diagnosed? 

                Madison was diagnosed with anencephaly at our anatomy scan at 18 weeks. An appointment was set up a week later at Carle Hospital in Champaign to see a Maternal Fetal Medicine specialist. The doctor there confirmed her diagnosis.

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

                Eric and I had just found out we were having a girl. My mind was already playing the highlight reel of our life- dance classes, cheer practice, proms, college, watching her walk down the aisle with Eric. When Dr. Haller said that she didn’t like the pictures, I thought she was just joking around with me and that I’d have to come back in the next week or two to get better pictures. Then her eyes welled up with tears as she told us that our daughter had anencephaly. I went from hoping we could decide on a name for her to hoping that whatever anencephaly was that our daughter would be able to live with it. Yet another blow when we were told that this was a fatal birth defect. My mind totally went blank, and I’m sure the color drained from my face. This was not supposed to be happening again. This was supposed to be our rainbow baby, not another baby that we would have to bury. I could tell that Eric was thinking the same things. He, of course, was the strong one and let me cry on his shoulder and held me up as we walked back to our cars. I don’t know how he drove us home from the doctor’s office, but he did. I think we both cried the rest of the night.

How did your other children react?

                N/A

Why did you choose to carry to term?

                Selfishly, I wanted to spend as much time with Madison as possible. She was very much wanted and prayed for, why would I cut my time short with her? And why is her life worth any less just because she was eventually going to die? I wanted to give her the same chance any other parent would give their child.

What was your favorite part of being pregnant?

                My absolute favorite thing about being pregnant was feeling Madison kick and move and hearing her sweet heartbeat. Nothing proves your baby was alive and living like the kicks and jabs to your ribs and that beautiful thumping sound. I would do everything all over again to feel her kick one more time.

When was your baby born? Did you have c-section or natural birth? How long did she live?

                Madison was born on March 8^th at 12:23 in the morning. I had a natural delivery. Madison was stillborn, but that didn’t make us love her any less.

What was your favorite part of meeting your baby?

                Oh I don’t know if I can narrow it down to just one thing! If I had to choose one thing, it would be getting to see what she looked like. From her chubby cheeks to her long fingers and toes (and arms and legs!), she was just so perfect.

What is your favorite keepsake?

                I have more than one, but I can do that since I wrote the questions right? My first favorite keepsake are the 3D ultrasound pictures and heartbeat bear that we had taken. I love being able to look at those pictures and see her favorite positions and how she liked to move around. And of course squeeze her bear to hear her heartbeat. My next favorite keepsake are the hand and foot impressions we took. I probably run my fingers over her hands and feet at least once a day. I love that I can feel all of the little crevices and wrinkles she had. And finally, I love that we have the pink crocheted blanket that they gave us at the hospital. It kept Madison warm the entire time she was with us, and I still cuddle up next to it some nights to be closer to her.

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

                Eric brought up the idea of donating Madison’s organs. We were told by one person that she would have to be born alive and weigh at least 6 pounds. Another person told us that we would not be able to donate her organs at all. I guess we could have looked further into donating her organs for research, but we never did.

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

                I donated 121 ounces of milk in memory of Madison. Her milk went to the Indiana Milk Bank, and will be distributed to hospitals in need from there.

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

                We talk about Madison (and Ian) all of the time. We have Madison’s heartbeat bear on display in our living room, and soon I will put up pictures from the hospital. We are planning a memorial flower garden for them out by our barn, and I am going to put up a small memorial wall in our house too. Every birthday for Ian we go to the cemetery and then go out to eat for his birthday dinner, and we will do the same for Madison. Our future children will most definitely know about their brother and sister in Heaven.

Would you change anything/do you have any regrets?

                I can’t say that I have any regrets. As I mentioned before, I would do it all over again just to feel her kick one more time, hear her heartbeat, to finally meet her. For me, and I’m sure Eric would agree, it was all worth it. If I could change one thing (aside from the fact that she had anencephaly), I would have made Eric hold her more after she was born. I know he let me hold her basically the entire time because I needed to, but I wish I would have made him hold her more too. Sometimes I feel like I robbed him of time with her because I was holding her.

How do you want your baby to be remembered?

                I want people to remember that Madison was real. She existed. She was alive for nine months in my belly. She was wanted. She was so, so loved. I want Madison to be a reminder to everyone that we aren’t guaranteed anything in this life. That we should cherish what we have and praise God for giving it to us. I want Madison to impact someone else’s life the way that she has impacted mine.

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

                I’ve said it twice in this post and I’ll say it again, I would do everything over just to see our daughter one more time. Anencephaly took her from us, and I will never forgive it. I don’t like using the word hate, but I’ve never hated anything like I hate anencephaly. I pray one day that they will find the cause of anencephaly (because it’s not as simple as not taking the recommended dosage of folic acid), and that they will be able to prevent this from happening to another family. 

Best Friends are Good for the Soul

I read a quote recently that said, "A good friend knows all your best stories. A best friend helped you write them." As I look back at all my best stories, I can't help but notice that these three girls are in practically all of them. (And if you didn't realize that by now you haven't been reading my blog long, ha!) Seriously, though. These three girls are the definition of a best friend. So you can imagine my excitement when the four of us all got together this past weekend for some quality girl time.

The weekend was filled with so many laughs, a few tears, and all the love you can imagine. And of course yummy food. And rain, can't forget all the rain ha! We even fit in an escape room and rescued the Mona Lisa (which Kendra and I both agreed was way bigger than the original painting).

I'm already looking forward to the next time we can all get together. By then we will have another baby to add to our bunch! Here's to many more weekends with these girls, writing the best stories of our lives together <3

Anencephaly Awareness Month: Week 1

May is Anencephaly Awareness Month. Before this past October, I'd never even heard of this birth defect. Now it has now changed Eric and I's lives forever. This entire month I'll be sharing information about anencephaly, as well as stories from a few other moms that I've gotten to know because of it.

Today, I'm sharing a little background information on anencephaly. Next week I'll be talking about the occurrence of anencephaly. The following week will be on causes and risk factors. The last week in May will be on diagnosis and outcomes. 

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So what exactly is anencephaly? Anencephaly is considered a neural tube defect (NTD). A more common NTD is spina bifida. The neural tube forms during early development, and as it closes it helps form the baby's brain and skull, spinal cord, and back bones. Anencephaly happens when the upper part of the neural tube doesn't close all the way. This causes the baby to be born without part of their brain and skull. This results in an opening at the top of the baby's head that is not covered by skin or bone. That's why most babies born with anencephaly will be seen wearing a hat, much like the one our Madison is wearing below.

Stay tuned later this week as I share our story again for you all, and the following weeks to learn more about anencephaly and hear from others affected by this birth defect.