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.