Angelbaby Cora is the next wonderful child in my Anencpehaly and Acrania Awareness Month segment. Like a couple of the other featured moms, Katie has decided to share Cora’s story with us in her own words rather than answering the questionnaire.
My name is Katie Ajtaji and I want to share with you my story. I grew up in a Christian home with loving parents and 2 younger brothers. I met my husband, Jon, at our church and we dated for 3 years before getting married. While we were dating we decided that we wanted to wait a while before having kids. A few months after our 6 year anniversary we found out we were expecting Lucy. We were excited about expanding our family and excited to meet her. Although we didn’t know until she was born that she was a girl. We didn’t want to find out what we were having. She was born on a snowy day in November 2013. We always wanted to have our kids close together in age. My husband is 1 of 7 and all of his siblings are about 1 ½ years to 2 years apart and my brother and I aren’t quite a year apart and the second brother a couple years later. So before Lucy turned 1 we started trying for a second baby. I found out I was pregnant in October of 2014 and Lucy turned 1 the next month. Pregnancy #2 was a lot like the first. Nothing sounded good to eat; I threw up a lot and was very tired. It was harder being pregnant this time around chasing a 1 year old who doesn’t walk but runs everywhere and we also remodeled our kitchen at the beginning of the pregnancy so a lot of our meals were frozen meals or crockpot meals which neither smelled good to me. I was so glad to have it done the middle of January and I was starting to feel a little better physically as well.
January 30, 2015 was our 20 week ultrasound. I couldn’t tell you the day we had Lucy’s ultrasound but this is one we will never forget. The baby was moving a lot that day and I was so excited to see him or her moving around on the screen. My husband met me at the hospital at noon. After we were done, we were going to go away for the night for our anniversary that was January 13th. I remember while we were waiting to go in I was talking a lot. I was excited for the ultrasound and getting to go away. We finally got to go in and we told the tech that we didn’t want to know what we were having which she was excited about because everyone wants to find out now. It started out normal but quickly got weird and I could tell something was going on. She was scanning the top of my belly then went to my bladder area to see if my bladder was full and told me to use the bathroom. When I came out, Jon was the only one in the room. After about 10 minutes, she finally came back and started scanning again. She said she would be scanning in the anatomy area of the baby so we shouldn’t look at the screen. She was very quiet and her demeanor completely changed. She was taking a lot of pictures and measurements but wasn’t telling us of what like they did with Lucy. After she was done she said she needed to talk with the radiologist because she saw something that concerned her. She was gone about 15 minutes but it felt like forever. She finally returned and said the OB Doctor wanted to see us and will explain everything in case we had questions. When we got into the hall way, I started to cry and told Jon I was so scared. We walked across the parking lot and waited forever to be called back. We were finally put in a room and the doctor came in. He sat down and took a deep breath and just said it’s not good and then started to tell us about a condition that we had never heard of. He told us our baby had anencephaly. It’s a neural tube defect like spina bifida but is affected at the other end of the spine. We found out that our baby’s brain did not develop and that she would die shortly after birth if she lived that long. He said that we had the option of terminating the pregnancy which I quickly replied no. To me she was very much alive and I was going to enjoy as much of her life as I had. That night we decided not to go away as planned and just stay home. We went out to eat that night because I had nothing planned for supper since we were to be gone. Jon and I were in a fog most of the evening. I wanted to hide for the next 6 months until this was all over and not share this hurt that we were experiencing but I knew that God could not change us and shape us more like him if we did not go through the hard times. The first verses that came to mind were 2 Corinthians 12: 9-10. It says, “but he said to me, ‘my grace is sufficient for you, for my power is made perfect in weakness.’ Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, hardships, persecutions, and calamities. For when I am weak, then I am strong.” These verses helped me see that even though the next few months were going to be some of the hardest we may face together, God would be the strength we needed to get through this time. We decided we wanted to get the word out as quickly as possible to our family and friends. That night Jon got a call from someone at work that they were looking for an order that wasn’t in the pick up like it should have been so he decided to head to work in the morning. Neither of us slept well that night so when he got up in the morning, I went with him. After we went to Bob Evans for breakfast and I remember crying while trying to eat biscuits and gravy and I told him I hope I can find someone that has been through this, but at the same time, I hope I don’t because I don’t want anyone to have hurt this way. After breakfast we headed to my parents to pick up Lucy and share with them what we had learned at our appointment. We asked them to share with my brothers and all of our immediate family and then I texted some of my closest friends later that day after we had shared with Jon’s parents. The next day was Sunday and we decided to stay home from church because it was going to be too hard to be around people. I asked a friend to share with our Sunday school class so that we wouldn’t have to and she was more than willing. That afternoon, I was flooded with text messages from people some I didn’t know at all or real well telling me that they were praying for me. One of those people was Andi Soergel. She had been through what I was going through and wanted to let me know that she was praying for me and was willing to talk with me and answer questions I might have. Another friend told me that she was praying that I would feel an indescribable sense of peace and comfort that could only come from God. This was exactly what I was feeling. Before getting her message, I told Jon that I was feeling very at peace with what was going on and that we would get through this and God would be holding us tight through it all.
We were referred to Akron Maternal Fetal Medicine. A friend told me to be prepared for them to encourage me to abort my baby. The next week we went to Akron for our first appointment with them. They did another ultrasound and this time I got to see it all. We found out we were having a girl. They printed off lots of ultrasound pictures and her heartbeat waves. The tech was so sweet and caring towards us. The doctor came in and looked over everything and confirmed about was found in Ashland. We then sat down with a genetic counselor and the doctor. They never once brought up terminating the pregnancy and treated our baby as any other healthy pregnancy. They were the most kind and compassionate people. The counselor sat with us and cried as we asked questions about what to expect and what we need to plan for. We met another nurse who is part of the palative care team and she shared with us ways to remember our little girl. We told them we wanted to deliver in Ashland if we could since it would be closer to home and our family since we didn’t know how much time we would have with her. So they were going to check with Samaritan to make sure they had all the memory making tools that Akron had. After we left, we had an appointment for my husband to get his oil changed. While we were waited, we decided on a name for our little girl. Cora June Ajtaji. Cora was a name I always loved and June is my grandma’s middle name.
We had a second appointment with Akron a few weeks later and meet more of their team. They did another ultrasound and gave us more pictures. We meet with several doctors and more of the palative care team. They made arrangements for hospice of Ashland to get in touch with us and also contacted the funeral home for us.
After that appointment we drove to New York to spend the weekend with our dear friends that moved from Ashland to New York for his job. It was so nice to get away and just spend time with people that we could be ourselves with. They loved us and that trip was the hardest to come home from. As we were pulling out, I started crying. I felt like being there we could forget for a little while what was going on and just enjoy life.
Over the next few months I did a lot of reading of blogs and books and listening to music. I googled a lot about anencephaly trying to get information about what to expect during my pregnancy but it was hard finding information from women who had carried to term. I found that 95% of anencephaly pregnancies are ended. So this explained why I couldn’t find much information. I came across 2 blogs that were very encouraging to me. The first was written by a pastor in Florida. He wrote the blog while his wife and him were expecting their first child with anencephaly. His blog was very encouraging to me. One of the first blogs that I read of his, he talked about how lucky his son was to not have to deal with this world and go immediately to heaven and be made whole and perfect. This was so good for me to read and helped change my perspective about Cora dying. The other blog written by a woman who expressed a lot of the same feelings I was feeling. One of the first blogs I read of hers was titled “I don’t want to walk this way”. She said, “the life of someone who follows Jesus is not a joyride, but it is a life filled with joy (the deep kind that doesn’t always show on your face but erupts in your heart and through your tears). It is not a life of ease, but a life full of hope (even when times of hope seem so far away).” There were several songs that became prayers of mine and I would play them over and over. Most were by need to breath and crowder. One of my favorites titled garden were often my prayer when we first found out about Cora. It says,
“Won’t you take this cup from me
Cause fear has stolen all my sleep
If tomorrow means my death
I pray you’ll save their souls with it
Let the songs I sing
Bring joy to you
Let the words I say profess my love
Let the notes I choose
Be your favorite tune
Father let my heart be after you”
I began praying that God would use this hard time to draw me closer to him and that through Cora’s short life others would hear of the joy we have in knowing Jesus Christ as our savior. I didn’t want to have to bury my baby but I prayed that I would honor God and that her life would bring others to Christ.
A friend got me Kara Tippet’s book “The Hardest Peace”. She wrote it about her journey with breast cancer but there was so much that was so good for me to hear. One of the best sentences I read in the book said “dear heart, the purpose of life is not longevity!” I wanted Cora to live longer than a few minutes this side of heaven and that statement helped me to see that that was not the purpose of life.
I posted verses all over the house to help me remember God’s truth. Some of my favorites are:
But for me it is good to be near God; I have made the Lord GOD my refuge, that I may tell of all your works.
The LORD is near to the brokenhearted and saves the crushed in spirit.
The Lord your God is in your midst, a mighty one who will save;
he will rejoice over you with gladness; he will quiet you by his love; he will exult over you with loud singing.
Trust in him at all times, O people; pour out your heart before him; God is a refuge for us.
It was so good for me to constantly have God’s word in my face reminding me that I was not walking this journey alone.
Some friends wanted to have a celebration of life shower for me. One put the idea out to me and told me to think about it. I hate being in the spot light and especially didn’t want to be on the spot in this situation. I hate crying in front of people and I was afraid that being put on the spot I’d cry. A couple weeks later she asked again and I reluctantly said yes. She said they’d keep it low key and do whatever I wanted. With the invitations they gave ideas for loving on Jon, Lucy, and I with gift ideas. We were blessed with many gift certificates to restaurants, the little buckeye museum, a zoo pass, and so much more. We were blown away with everyone’s love for us. I wasn’t sure I could open the gifts in front of everyone because I didn’t want to cry so I opened it but didn’t read the cards at the time just who it was from and then later read every card. They also included a card for people to write a note of encouragement to me that I could read later. I had enough to last almost to my due date so I decided to read one a day till Cora came.
At my 33 week appointment I was measuring 42 weeks. My doctor wanted to see me back in 2 weeks and wanted to do an ultrasound in the office at 35 weeks to see if I had too much amniotic fluid. That is one of the side effects of pregnancies with anencephaly babies. On Thursday may 14th I started having contractions. I had Lucy at the doctor for a cold that afternoon and then met Jon for dinner. I was having contractions off and on through dinner but I thought it was from doing too much that afternoon and just needed to get home to lay down. That evening I stayed on the couch and didn’t have contractions like I had through the afternoon and dinner. I woke up around 3:30 to go to the bathroom and started having contractions again only this time after laying back down they didn’t stop. Jon was going to work early that morning so I told him I’d been having contractions that were pretty consistent and that we may need to go to the hospital. He needed to take supplies that he picked up in Mansfield back to work so I told him I’d email if we needed to go. Around 7:15 I emailed Jon and told him to come home and called my dad to see if he could get Lucy. He happened to be just coming through Jeromesville when I called and stopped by. I didn’t have anything packed for myself or Lucy because I was 35 weeks and wasn’t expecting to go into labor early. So between contractions I was packing bags. Jon arrived about 45 minutes later and my dad prayed for us before taking Lucy with him for the day. Jon finished packing bags and then we headed for the hospital. They got me hooked up to monitor the contractions and see how far apart they were and monitor Cora’s heart beat. I’m not sure how big I was measuring at that point but I had been miserable for the last couple weeks with back pain and just feeling huge and tired. I was to have my 2 week follow up appointment with my doctor that day to have an ultrasound but it was at the end of the day and so she came over around 11 to see what was going on and did an ultrasound there. She found that Cora was breach and wanted to call Akron maternal fetal medicine doctors to see what they thought. They were very comfortable delivering vaginally at Akron and my doctor did not feel comfortable delivering Cora and wanted to send us to Akron. I started to cry because I had such a good experience in Ashland when I had Lucy and had my heart set on having Cora there too. As I cried my doctor cried with me. She said she woke up thinking about me that morning. There were several other people that text me that day saying the same thing. God knew that we would need many people praying for us that day and the days to come. Jon and my mom left while I waited for the squad to show up to take me to Akron. It was the fastest ride I’d ever had to Akron. They left the hospital with lights and sirens all the way there. My nurse when I arrived was Michelle and she was so sweet and kind. She got Jon and our parents a private family waiting room for them to stay in when the doctors needed them out of my room or when I needed to rest. She advised me to get an epidural as soon as possible if I was planning on having one so that I was more comfortable given our situation. So I did that a couple hours after arriving and never felt another contraction. A friend was there to take pictures for us and liked watching the contraction monitor. She’d see when they were coming and say oh that’s a big one but I didn’t feel any of it. I had so many messages coming from Facebook and txt messages. Some from people I didn’t know saying they were praying for me. I had Deuteronomy 31:8 going through my head the whole night. It says
Deuteronomy 31:8 “It is the Lord who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed.”
It was so comforting knowing God has already been where we were about to go and knew the outcome and would be holding us tight the whole way. God brought us humor when we needed it from the doctors who came in to check on me that kept getting younger and younger to the breaking of my water. One of the doctors who looked barely out of high school came in to break my water. Based on the way she moved in my belly I knew that she wasn’t very big and that my belly was mostly amniotic fluid. The nurse put a towel under my butt and then the doctor sat on the side of my bed to break my water. I almost said that they would need more than the towel but I thought they are the doctor and nurse and know what they are doing. As soon as she broke my water it was a huge gush sounding like a bucket of water was hitting the floor. My gown was soaked along with my bedding and the doctors scrubs. Another nurse came in to help get everything changed quickly because it was getting close to delivery time. The doctor came back in along with Dr. Wolfe from maternal fetal medicine. They told me to push when I felt I needed to push. After just a couple pushes Cora June arrived at 5:41 am on May 16. Her eyes were open but she was very quiet. They cleaned her off quick and handed her to me. She was perfect. She may not have been whole physically but she was my little girl. I couldn’t see that she was breathing and kept putting my hand on her chest to feel breath movement or her heart beating. The nurse saw this and came to listen for her heart beat and it was still there. I passed her to Jon and then each of our parents held her. They passed her back to me and the nurse checked again and there was no heart beat. The doctor came to listen as well and confirmed that she had passed away. As we cried Jon asked my dad to pray. I don’t remember the words he prayed but we were praising God for her short life and that she was dancing in heaven. A friend had texted my dad later that day saying that she woke up at 6 and God was telling her to pray for us. This would have been about the time that Cora passed away.
After a while the palliative care team came in and did hand and foot molds and foot prints. I painted Cora’s toenails to take a picture of our feet together. My brothers and their wives came and brought Lucy so she could meet her sister and we could take pictures together. She was so excited to hold her and she gave her kisses and hugs. Everyone left mid morning and it was nice to relax a little bit.
We asked our nurse if we would be able to go home that day. I just wanted to sleep at home in my own bed. She was very reluctant to ask but she did ask and the doctor said that was fine. That night was the best I’d slept in a long time.
We planned Cora’s funeral for the following Saturday May 23. Jon and I wanted something short and simple and one of blogs I read they did just a grave yard service with just family and close friends. I loved that idea so that’s what we did. Jon grew up near a cemetery that we both thought was beautiful. It’s on a hillside overlooking farm fields with a white fence around it. We checked to see if we could have Cora buried there and we could. We couldn’t have asked for a more beautiful day. It was sunny and low 70s. We had our pastor, who also married Jon and I, do the service and it was exactly what we wanted. He shared on psalms 139 which was another part if the bible that I read often. The whole chapter is great but my favorite verses are Psalms 139:13-16:
For you formed my inward parts;
you knitted me together in my mother’s womb.
I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
my soul knows it very well.
My frame was not hidden from you,
when I was being made in secret,
intricately woven in the depths of the earth.
Your eyes saw my unformed substance;
in your book were written, every one of them,
the days that were formed for me,
when as yet there was none of them.
Cora’s tombstone has fearfully and wonderfully made on it.
One of the blogs I had been reading he said “On days I am tempted to think, “Why me? Why my son?”; I should ask “Why am I so blessed?” Instead of being sad or angry for the time I will not get with Joses, I should be thankful for the time I have with him now. There are so many lessons I am learning right now about God through my son. I do not want to have to bury Joses. However, growing closer to God over the past few months has been worth all of the pain I have felt. Is there a greater blessing than growing closer to God?” It all seemed impossible to go through at the beginning of this journey but through Cora I learned so much about God’s comfort and peace that I may not have learned otherwise and I continue to pray that God will use my story to show his love for us. God’s plan isn’t always our plan but it’s perfect!
It’s apparent from Katie’s story that Cora is forever present and thought about, that she was celebrated from day one and continues to be celebrated. One of the things that resounds the most with me from Katie’s and Cora’s story is the quote that says life is not about longevity. Our babies are pronounced “incompatible with life,” but from the moment they begin to grow, they are living, they are ours, and they are loved. Every kick, elbow, and wiggle is profound and cherished. Thank you, again, for sharing your story with us, Katie. ♥