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Austin John

Austin John, baby with anencephaly

My 5th pregnancy, 4th child (one miscarriage), was not exactly planned. Half of me was excited and half of me was wondering what I had done! My other three children were 5, 3 and 11 months. Many thoughts raced through my mind. My biggest fear was bringing a baby home to such a full house and my youngest being so small. I did not know how I was going to divide my time with work, kids, & school between 2 children less than 1 ˝ years apart. I had just been done breastfeeding our smallest less than 3 months prior to finding out the pregnancy news and I was going to start all over again. Hindsight, my biggest fear should have been not bringing a baby home at all.

The pregnancy began and the first 20 weeks flew by. I felt like I was gaining weight normally and a few weeks before I hit the half way mark, I was starting to adjust to the fact that we were going to have another baby. I had many conversations with my husband questioning how different I had felt toward this baby. It is nothing I could pinpoint, but I remember telling him how I could just not get attached and the bonding was feeling different. We both thought that because we did not plan this, it was just going to take time and that when the baby was in my arms bonding would be natural. I now think it was a mother’s intuition and a defense mechanism built in takes over helping you to guard your heart. I would go to sleep waiting for a dream each night about my baby. With my other children I dreamt many dreams and each dream would accurately reveal the sex of our child. I could not wait to see if my intuition was correct and reveal that our baby was our first boy.

At 20 weeks – August of 2007, we went for our first ultra sound. We anticipated hearing the sex of our baby. Would this be our first boy or would we get 4 girls. Many people insisted and hoped that we were having a boy, I on the other hand could not see myself a mom to anything but girls. I also figured that God had given us this baby when we hadn’t asked for it and we were happy – he must know what he’s doing should he give us a boy!

Over the years, we have had many ultrasounds - this is my 5th pregnancy, so we have developed a small relationship with the ex-ray technician in Crookston, and within minutes we could tell something was not right. All she could tell us is that we need to see a dr. right away and knew Dr. Kanten, my regular OB, was out of town. Fatality had not even entered my head. Tears of fear began to flow and I questioned my ability to care for a child with special needs when I have a 1 year old at home and 2 others who need me.

After about an hour of waiting, Kanten's replacement sat down and told us that this baby is not viable and will not survive. He said we needed to go to a different hospital to induce labor and delivery and the baby will die. Crookston could not perform this because of the high risk of bleeding. The first this I told him is "I can't kill my baby!" Immediate devastation and terror filled my mind and I cried uncontrollably on Aaron’s shoulder. The pain was indescribable. The shock was unbearable. There are no words to describe how your mind thinks with this news. I could actually feel my heart be ripped from my chest and that would have felt better than the pain I was feeling. This was my darkest hour through the whole pregnancy. Utter darkness! The doctor did not tell me that our baby had Anencephaly, he just said that he did not have a head and could not really clearly see if his facial features were in tact. He said something about possibly having one eye.

We were left with a big decision to make. My heart knew the whole time what the “right” thing to do was. My body was saying another. I wanted out of this pregnancy in the most desperate way. I sought out people who would tell me that I did not need to carry out this pregnancy and that it would be better for me and my family to terminate before I started to show.

I researched throughout the night and came across many websites. Some pictures were horrifying. I now realize that the horrifying pictures were shown of babies less than 20 weeks gestation. The babies at full term were shown with hats and were no different than any other baby. I could not understand how some of these moms who carried their babies to term could receive any satisfaction or any blessing from a doomed pregnancy.

Our priest referred us to a priest who specializes in ethical medicine named Father Bob Schreiner. My husband and I were determined to follow the churches guidance and would obey the direction of the priest I walked into his office begging for him to tell me that it was okay to terminate this pregnancy or as I called it “induce labor early”. I explained to him how I was merely life support for this baby who had been implied to me by our doctor’s replacement as “not human”.

Father Bob has actually walked this path with many parents. He listened intently to my sorrow and calmly explained that the church, in this circumstance, feels that at 33 weeks would be a proper benchmark to induce labor and delivery. The reason for this is that any healthy baby will survive a delivery at 33 weeks, anything prior is not likely and very risky for death. The church feels that this baby is meant to die from Anencephaly. Anything prior to 33 weeks would be a different cause of death. At 33 weeks, the risk of carrying this baby increases for me, which is also another reason for that benchmark.

Austin John, baby with anencephaly

My arguing with him did not change the churches standpoint. I told him how I felt and that I was praying for God to take this baby to heaven now, at his will. He shared that even Jesus pleaded with God for a different way before he died and Jesus had the free will to walk away, but he chose not to. He felt that we were chosen by God to bear this cross and in God's eyes, this baby is nothing less that perfect. He disagreed with the Dr. we saw and said that right now, this baby is viable. It is completely alive and with a soul but just imperfect from a medical science standpoint. He also used the example that even Mary knew her baby was born to die, just like ours. He promised that our baby will be of great things, even though we may not see it short term - maybe one day our children will come to us and say what a valuable lesson this ordeal has taught them and this is shaping their character for what they are to be faced with. The point was that we are not meant to see the bigger picture, we are supposed to let our faith guide us. At this point, it is not what is best for us, it is what is best for this baby and this baby is viable inside me. At 33 weeks, it is possible, depending on the brainstem that should be baby not be born still. I could be able to nurse the baby because the brainstem will create involuntary sucking. The baby could squeeze our hand and maybe cry. Some babies can live for a few days, but most die within a couple of hours, completely painless.

Our hours of conversation confirmed what my heart was telling me. I knew what I had to do and hoped that in the end it was what I wanted to do. I knew that this was a decision I could be proud of and have no regrets. I would carry this baby to at least 33 weeks.

This pregnancy progressed and time slowly became my friend. My regular doctor took over and handled our situation with care and concern. Each week something would happen that would get me through to the next. During weeks 20-24 I experienced minor contractions that gave me hope for the end. When that surpassed I began to find hope through praying for a miracle. By 28 weeks, I became depressed and unhappy. Polyhydramnios began to set in and by 31-32 weeks I was miserable. I have a history of tacacardia during pregnancy and sure enough I was not spared those symptoms during this pregnancy. Walking up the stairs was physically exhausting and I needed to stop to catch my breath at the top. By noon, I crawled to my bed for a nap only to wake up 3 hours later and still be tired. I was given Labatelol to relieve the tacacardia symptoms, which significantly helped.

At 32 weeks our church offered to give us a Baby Prayer shower. As I listened to their proposal about what they’d like to do for us, all I could do was sob. What an honor! I’d get to share my child’s life and lift him up in prayer just right before he needs it the most. My baby was going to get a baby shower! My heart has never been so touch at such a thoughtful and innovative idea.

We nervously arrived at our prayer shower for Austin, not knowing what to expect. We first walked into a peaceful church lit by candles and soft music heard in the background. They led us downstairs where an overwhelming display of celebration was to take place. To be honest it was decorated exactly how I picture his funeral celebration to be. Blue and white balloons were scattered everywhere. Blue was very different for me to see. With 3 girls, blue is a bit foreign, but such a refreshing change of pace! After a few minutes of visiting with our families, we were led back upstairs to the front pew to await the service.

Walking in the pew, it was evident that the Holy Spirit was at it’s best. Although many people shed tears at the song of “Road to Bittersweet”, I enjoyed watching Lexi and Aubree sing the words to Austin’s song that they knew so well. Many prayers appeared in perfect words on the screen. All in unison, the full church was asked to pray silently specific prayers relating to our baby. Not only were prayers offered for Austin, but the grandmas, grandpas, his sisters and a specific prayer was offered for his doctors and nursing staff. Each slide lasted about 2 minutes and most of the specific prayers were followed by structured prayers. For example, when they asked for prayers for Aaron and the Grandpas, the Lord’s Prayer was displayed as a suggestion for people to pray. A calming surrounded me and comfort was all I could feel. I could hear sniffles in the background. I snuck a peak behind me and saw the church filled with standing room only! I saw lots of people with lots of tears. People genuinely cared. The most joy I felt was knowing that Austin’s life was of value, not just to me and Aaron but to others too. His life was not minimized like I would sometimes feel. At this moment I was so very proud to be Austin’s mom and to shout that he was my little boy.

We were just showered with hugs and kind words. Our kids ran around like crazy people after the service enjoying the extra, well deserved attention. Not only did we need this, but our kids needed it too. They were able to tell people what was wrong with Austin and how it felt from their point of view. Finally, an appropriate moment for them to talk about their brother with others! This shower came at just the right moment for us, and we couldn’t be more grateful to share him with over 200 people who respect his life as much as we do. This shower gave me the strength to continue this pregnancy beyond our benchmark goal of 33 weeks.

At 33 weeks, Aaron and I decided to give Austin’s lungs a bit more time to develop. We had come this far determined that his cause of death would not be on our hands. I knew that I could make it a couple of more weeks. I was induced at 35 weeks, but Austin was not ready to be born. By the end of the 1st induction process, I would only dilate to 1 ˝ cm. I nervously went back the next week expecting a long, hard, tough labor. I began to think I’d be pregnant forever without the functionality of his pituitary gland. The next week though, the labor was long, but very tolerable, until the doctor broke my water at about 9:30 – 10 p.m. at which point I was dilated to about 7 cm. After my water was broken and without exaggeration gallons of water poured out, there was no turning back and pain was excruciating, just like any other baby.

Austin John, baby with anencephaly

Austin was born at 10:44 p.m. and was born alive. I was so worried that he'd struggle. He didn't one bit. He was born with a heartbeat but not one single bit of repertory effort was made on his part. They placed him in my arms and his eyes were big and wide and stared directly into mine. He lived for 11 minutes and we have every second on video tape. His eyes did not blink once and he did not cry. My sister (who was video taping) said she thought he looked at me in complete awe and she felt in his stare how much he loved me. I placed my cheek against his warm cheek and held his sweet fingers. He was so weak. For not one single second did I beg for him to stay. It was peaceful and there was an unexplainable calming in the room. Had they not told me he was alive, I'd have never known. It was just my job to be there for him as he went onto the next place and take all my love with him.

Before he was born, I did not know what I should expect visually when I would first see my baby. I saw him and I did notice his anomaly (some moms have said they did not notice and they only saw their beautiful baby). Directly above where his eyebrows would have been was flat and tapered back. As I held him outwardly, the back of his head fit in the palm of my hand. His eyes were big and they were bulging – but they were beautifully big, in fact all of his features were big and I can only assume they appeared that way because his head was so small. With his hat on they did not appear larger than any other baby. His lips were the most beautiful lips I had ever seen. His face, from birth and I assume the lack of oxygen was very bruised and blue. Austin’s ears were folded in half, which were my husband’s favorite feature because they were so unique! The back of his head all the way down to where his brain stem started about ˝ inch above his neck line was exposed tissue of some sort and was red in color, but not weeping blood (even though his little hat has blood stains on it which I will treasure forever!) The open lesion was about the size of the palm of my hand. Like I said, I noticed his anomaly, but it did not change one bit how I felt about him. To me it was like a scrape on my other children’s face, yeah I would notice it, but it doesn’t change one bit how I feel about them! I also had to take a peak under his diaper. With 3 girls at home the genitals were a bit of a curiosity to me. Yep, we had a boy! Because he was lacking a pituitary gland, the hormones that create reproductive organs was not functioning so his genitals did not grow normally, but it was plain to see that we have a son!

When the doctor was finished with me and after Austin had passed, we allowed all of our family to be apart of his birth and hold him and love him and cherish his memory. We took photos of Austin with everyone who was there. At about 1 a.m. our family brought my two older girls to meet their brother (the doctor thought that morning may be too late for a good visual experience with the kids). What a beautiful memory and my favorite part of Austin’s birth. The innocence of our girls was breathtaking. They held him, kissed him and loved him wholeheartedly and unconditionally. The feeling I had watching my girls with their new brother was everything I could have hoped for him and more. I didn’t want their time with him to end but the lack of sleep got to me and by 3 a.m., it was time for them to say goodbye to their brother.

By morning, the nurses brought Austin back to me (they had made foot molds, hand molds, foot prints, hair cuts, throughout the night.) and I hardly recognized him. He had changed so much and I knew he was completely gone. He hardly looked like the baby I had just given birth to and his body was so cold. I can vividly remember that the lips that were so full the night before, were now narrow and lacking life. I placed him in his crib and awaited the arrival of the funeral director. I’d look at his crib and I would cry so sad that he wasn’t in my arms crying, fussing, or nursing. The funeral director prayed with us and allowed Aaron to gently place Austin in his new crib, a white 2 foot casket. I cried as I watched him close the lid and wheel him away.

We had a small funeral for him with family and a few friends. I opted out for the large funeral because hormonally I was just not ready for the mounds of people who would have come. I desperately wanted them, their hugs and their love, but I just wasn’t ready to let my guard down and was so afraid to have people see me fall apart. I had been so strong and was so proud of how strong I was, allowing people into that side was so frightening for me. That day, I cried for my baby in sorrow, but there is no heartache compared to the day the doctor told me that Austin was “Not Viable”. At his funeral, I was crying for me and that was only half the heartache. When I found out his diagnosis, I cried for him and for me, terrified for both of us. I did not need to worry about Austin anymore and my faith assured me of that.

Austin John, baby with anencephaly

I can say that I have 4 regrets: not bringing my youngest child there to meet him and take a photo with him (she was 1 ˝ at the time and it was 1 a.m.); not allowing our nieces and nephews (Austin’s cousins) to meet and hold him. Not only would that have been closure for them, but our kids love to talk about him and it would have given our children the opportunity to show him off to people they could relate to and who loved Austin equally; not taking a photo of Austin naked while he lay on his belly (every baby deserves a butt shot); and finally not taking a photo of the altar at his funeral. The altar was beautiful.

Throughout the pregnancy and shortly after his birth, there were many well-meaning people who just wanted to help. Yes we heard the comments: “Thank God for your other three”, or “You can still have more, your young,” or “Wouldn’t this have been easier at 20 weeks?” or “How sad, your only boy.” or “I bet you can’t wait for this to be over.” These comments never bothered me once. I noticed them, but I also understood that people are kind and they are not lying awake at night trying to think of a way to hurt the mother of a dying child. Most of the time, they just didn’t know what to say and they were trying too hard to make a bad situation better. The fact was that there was nothing they could say to make it all better, but there was really nothing that could be said to make it worse either.

The grief process will take time they tell me. I am okay with that. I don’t ever want to forget about Austin and this journey he’s brought me through. I believe that we began to grieve for him the day we found out his diagnosis and that was a blessing. We were able to grieve for him and still have him with us, completely healthy, happy and secure. I await and pray every night for a dream sent by Austin. I can’t wait for that reassurance that he is okay without me, even though my faith tells me he is.

For other mom’s just starting their journey, I am sorry for you. The one thing that I didn’t realize until it was nearly over was that we were focusing on what Austin didn’t have. All the while, we should have been focusing on what he did have and what he did bring to us. He had everything my other children had, but most importantly, his soul was just as beautiful and perfect. I can’t wait to get to know that beautiful soul one day! His life, no matter how short or how drug out the pregnancy seemed to get, it was still his life and he was entitled to it and as a mom it was my job and honor to be there for him. Now, there isn’t a day that goes by where I do not hear of Austin’s name in thanksgiving, often by strangers or acquaintances. He has touched the hearts of many, even though he was disadvantaged. In my lifetime, I hope to have reached as many people as this little boy. Our blessings because of Austin are uncountable and I am sure that most are unnoticed and blessings continue will pour out because of him throughout my lifetime. Right now (and it’s only been 4 weeks since his birth) I can say that my marriage is stronger and a deeper friendship has evolved (most days), I am more compassionate, I am taking less things for granted with my other children, my interest to help others in Austin’s memory is phenomenal, our extended families have grown unexpectedly closer, and I am yearning a stronger faith life.

I have often said to many, if God gave me the choice to have Austin with Anencephaly or no Austin at all and to never have known the heartache, I’d choose Austin with Anencephaly. I have the hope that when I get to Heaven, he will greet me with open arms saying “Mommy, I’ve been waiting for you!”

 

Take a look at the video Austin's parents made about his life

 

Read April's journal during her pregnancy with Austin.

 

Read an article written about Austin's family.

 

Listen to a radio interview of Austin's parents. The interview actually starts about 11 minutes into the recording.

 

 

Last updated February 14, 2008