In the winter of 2003 my hubby, Doran, and I, Sue, had been married for sixteen years. In those sixteen years we had the joy of birthing and watching four beautiful children grow and the sorrow of miscarrying another. Besides enduring five years of infertility, I had lost half my eyesight to a migraine stroke and had been diagnosed with chronic depression. Doran was diagnosed with a chronic heart condition and we learning that one of our wonderful children had severe Attention Deficit Hyperactivity Disorder. I had been a stay at home mom during the week and worked weekends as an emergency room nurse, but in the last year had joyfully returned to work part time during the week. I had three kids in school and had gotten my life "back" again. I was really looking forward to the next school year when all four kids would be in school and my days off would be mine! I would have time to spend as I wanted--what a great luxury! We had completed our family and had moved into the next part of our lives. After all we were in our 40's. Life was right on track as we saw it. God saw it another way... We were shocked and dismayed to find out I was pregnant. I was not happy as all my plans for the next years were going to change. What a disappointment. Our kids, though, were DELIGHTED! Joe was ten and thought that the joy of having another baby would never happen again and to my surprise was thrilled at the news. Abby, at eight and our only girl, had been praying nightly for three years for a sister. She was sick of only having brothers. I was praying just as hard not to get pregnant! Now all her prayers were being answered. Jake was six and loved babies, so he was happy also. Pete was four and didn't quite understand how this was going to affect his status in the family, but was happy to follow along with his older sibling's joy. Needless to say, with all this enthusiasm, Doran and I got excited too and started making "Plan B" for our lives. We set up a sitter so I could continue working and talked about adding on to our house. We decided that God's joke was on us! And life went on for us with a new little life tucked safely inside me.
I was an "old hand" at pregnancy, so all the tests and doctor's appointments somewhat annoyed me. My biggest concern was that this child may also have ADHD. I didn't know how I could deal with another child with this diagnosis. I reluctantly agreed to have a routine AFP (Alpha Fetal Protein) test. I had a false positive with this test when I was carrying Abby so didn't much care to have it done. After all, if something was wrong with my baby I would continue to carry as I was Catholic and Prolife. I agreed to the test just because I was too tired to argue with my obstetrician. His reasoning was that we would be able to plan if there was anything wrong. Plan what? I would carry no matter what and my child would be given everything medically needed no matter what it's diagnosis was. A Down Syndrome baby deserved a life and neuro tube defects could be corrected. In hindsight, I see how ignorant I was.
One week after having the AFP done I received a call at work from my doctor. The AFP had come back abnormal. I sighed as I had been down this road before. He wanted to schedule me for an ultrasound five days later at the Perinatal Center. A little confusing as with Abby I just had a regular ultrasound at the clinic. Ok, I figured that I would take that morning off work and go back as soon as I was done. I also told Doran not to take off work as this was no big deal. He wouldn't listen and instead said he would take a little time off and meet me at the center.
On March 31, 03, a Monday morning, after getting the kids off to school and myself ready for work, I drank my required water and headed to my appointment. I was the first patient there which struck me as odd as I was an add on to the schedule. Doran met me and we both waited as the perinatal specialist was finishing a delivery. Well, I was 44 years old and had been pregnant for the 6th time and my bladder is not what it used to be! I was pacing, sure that I would have an "accident" right there in the office. Finally the ultrasound tech took pity on us and started without the doctor. She showed us our baby's heart and spine and little body. This little person was moving all over and everything looked fine to us. What a relief! See, Doran, there was absolutely nothing to worry about. When the tech left to find the doctor, Doran and I talked about all our hopes and plans for not only this little one but for all our kids. The specialist came in walked to the ultrasound screen, looked at it and turned and without looking at us said, "Your baby has anencephaly." Being a nurse, I somewhat knew what this was but I couldn't comprehend and I knew Doran didn't understand so I asked if this condition was compatible to life. I always revert to medical jargon when I am stressed. The answer was a curt "No". There was no brain or skull from the eyebrows up. We were to meet with a genetic councilor when we were ready to leave. She left the room. Did she say "I'm sorry." I don't know, I just don't remember. My world had stopped. I couldn't move. If I did then this would be real. I am numb. The tech is crying. I can't see Doran. If I look at him than this may all be true. I can't cry. I am numb... Nature took over and I had to get to the bathroom finally. NO, NO, NO!!!! The sobbing started and may never stop because what she said, the unthinkable, is true.
The genetist was waiting. They knew before I even had the ultrasound done what the results would be. There was also evidence that this baby had a chromosomal disorder, one of the trisomys and possible Down Syndrome. I would need an amnio to tell for sure but what difference would knowing make? We started talking. How were we going to tell the kids, how would this affect them? What do we tell Abby who had had her prayer of 3 years answered? I watched my dear husbands face crumble, struggle to hold back tears only to lose the battle. What do we do? Isn't there a surgery? Why did this happen? We were told a "bad" egg. What! We were shocked, numb and bewildered and all I could do was cry.
They sent us to our OB's office. There we found a room full of moms in various stages of pregnancy we had to wait with. One was at the reception desk loudly complaining that she had to wait for her appointment as the doctor was running late. What a stupid, stupid lady. If only you had something worthwhile to yell about. Tears were streaming down my face dispite my best efforts to hold them in. The TV was on. Iraq was being invaded and other parents were losing their children to war. This is hell on earth. It seemed like forever before we were taken into see our doctor. Essentially we were given 2 choices: we could terminate or we could continue the pregnancy. Most women terminate. "Could you, my doctor, do the termination?" "No, you would have to go to the Women's Center." "But that is an abortion clinic!" The light finally went on and I understood what they were trying to tell me in fancy talk. Termination was abortion! In my shocked mind I had not understood that! I can't do that! I am Catholic and Prolife! My doctor said, "Well I'm Catholic too and in these cases..." But I need to hold my baby not have it torn apart in pieces! In that case we can induce labor but would have to inject a solution into the baby's heart to stop it before inducing. I can't do that! That would cause my baby to die! As I was 16 weeks we had time to make a decision, we were told.
Doran actually had to go back to work. No way could I emotionally do that. I drove myself home crying and praying all the way. How I got home, I don't know. Oh God what do we do? There is not just me and the baby to consider but our other kids too. How can I ask them to watch me for the next 5 months getting bigger and knowing that this baby was going to die? That is not fair to them and how could they cope. Could they cope with either choice? How could I "terminate" this baby and tell them. They would never understand. If I lied to them and just told them the baby died, how can I lie to them? My head was spinning. I did what any adult child would do, I called my mom and we cried together. More gray hairs for her compliments of me. She is the most prolife person I know but didn't pressure me on either choice. She just loved me and prayed.
We had to tell the kids. It was only fair as they would surely know that something was wrong, so when Doran got home that night we sat them all down. We told them that the baby was sick and was going to die. We didn't know when and there was nothing that the doctors or anyone else could do. We did not tell them what was wrong with the baby as I felt that they may not be able to handle that right now. Abby immediately became upset and started crying. Joe avoided everything by asking the little boys if they wanted to play. Not a good sign. Jake and Pete didn't understand what was going on. I knew they would need a lot of support, whatever happened. What a horrible day. The absolute worst day of my life, so far. I was afraid worse was to come.
That week I met with our priest who looked into the Catholic Church's stance on this. The Church would not allow a termination as, of course, we believe that life begins at conception and is sacred no matter what and that life only ends when God wills it. Bless his heart, Father said that he would be there for us whatever we decided and of course would bury our baby with us. What a wonderful man of God. I also went to see a councilor as I was very worried about how the kids would handle me carrying to term. He advised me not to go through the pregnancy as I had a diagnoses of depression and he was worried about my mental and emotional health. What about my mental and emotional health if I went against everything I believed in and had to live my life with the knowledge that I consented to kill one of my children? He said not to worry about the kids as they would adjust to whatever and would follow Doran and my lead. He also said he would be there to help us and the kids when we needed him no matter what our decision. Good man but a little misguided. Now we had to make the "decision". Doran said it was my decision as I was carrying this baby and he couldn't ask me to do anything I wasn't comfortable with I really thought he would want me to terminate. Then he said, "What would we do if we didn't know. If we didn't have the technology to know that something was wrong?" Of course we would have continued in absolute bliss which at that point would have been a blessing. I told him that it wasn't fair that he was putting all this on me as our decision would be felt by both of us and our kids and if I carried to term I would need him as never before.. I went to bed and laid awake and prayed. I had been praying since getting the diagnosis. Actually the first day I had asked God for a sign of what to do. I never expected to get it but I did. In fact He answered it quite literally. Several times a day I drive by a Baptist church that has a message sign out front. That week the message was "Regret looks back, Faith looks up". Everyday I drove by that sign knowing that I was fooling myself if I thought I could do anything but carry to term. I, being human, wanted to cover all my bases first. I sat in my bed, my refuge, and finally prayed, "God, your Will be done." The decision was made. It was really not my decision to make, it was God's. I felt the strongest feeling of peace. I can't even put into words that feeling that blanketed me. God was with me, I was not alone with this. Actually it was so easy. In the end all I needed to do was to accept and trust in God and let Him do the rest. I never looked back and I have never been the same person since.
I came to know that accepting and trusting God was not quite enough. There was a choice in accepting with grace or accepting in anger and feeling sorry for myself. I chose to carry in God's peace and grace. That meant accepting not only the joys of my baby but also accepting and forgiving the stupid (for the lack of a better term) comments of those who were well meaning, those that didn't know our diagnosis and those who didn't agree with my carrying a child who would die. I actually had comments of "no brain, not human". I was congratulated by many strangers who didn't know how my heart wept at their words. Others seeing me with my 4 kids said, "Not another one! How are you going to manage another one?" Oh, please God, I wish! Many people knew of our journey as I had let the school and my kid's friend's parents know what was going on. The kids were going to need all the support from the school and their friends as they could get. I also am very active in the school and all the kids know me and would be struggling to understand what was happening. Everyone pitched in to help my kids. There were many group hugs during Abby's classes. I had many kids come up to me with questions and comments. Their parents would have been shocked and dismayed if they had heard but how wonderful kids are in their innocence! I remember one little girl coming up to me as cute as can be and in a very serious voice said, "Mrs Jorgenson, I am very sorry about that dead baby inside your tummy." Then she skipped off before I could answer. How much better than some adults that just plain avoided me!
Often after telling someone of our diagnosis, I found myself consoling them. How odd, I thought. You do what you have to. I had a hard time with obviously pregnant women. It hurt to see them but the world has many pregnant women so you just go on. I hated my doctors appointments and could see no reason to put myself through that torture. I would go in praying to still hear a heart beat but also wanting this nightmare to be over. Sometimes the nurses didn't know our diagnosis and would make cheery inappropriate comments. Others just wanted to get away from me as if I had a disease they could catch.
Everyday I prayed for strength to get through. You go minute by minute and soon it is hour by hour and then one day is done. At night I couldn't sleep due to restless leg syndrome that I get when pregnant. I also had developed polyhydroamnios, a condition in which the baby cannot swallow the amniotic fluid so therefore it builds up. This gave me severe heartburn that I just couldn't get relief from. The weeks after diagnosis day my depression became worse to the point that one day I couldn't get out of bed. I had restarted my antidepressant but had to double the dose. After that I was better able to cope emotionally. My OB doc gave me a prescription for sleeping pills. Even I had to laugh as I refused to take them because they could cause birth defects and I was pregnant. Duh! Of course the doctor didn't laugh and probably still doesn't understand. I was very lucky at work. I work with a wonderful group of people who were there for me every single day. I could be myself with them and the fact of what was happening to my baby was accepted and I was accepted unconditionally. My bosses were supportive beyond words. My job was my oasis of normalcy and a world that had gone mad. I am forever greatful for these wonderful caring people and owe them my sanity and my everlasting gratitude. They were and are support beyond support and exemplify the meaning of caring.
I tried to find out as much as I could about Anencephaly and to find other people that had been through this but was unable to because of my inexperience with the internet. The genetic councilor was not much help. I wanted also to see pictures to get myself and family ready for what was to come. It was important to me to be ready. I could only find one pencil drawing which was helpful to show the kids but didn't meet my needs. Jake looked at the picture and said that he knew why the baby was going to die...because it didn't have a brain and you had to have a brain to live. He also struggled with why we would want to name this baby because if you don't have a brain you wouldn't know anyway. Very literal. I explained that everyone needed a brain and when our baby got to heaven he/she would get one from God and so really would need a name. This worked for him! I would hear Joe crying to himself at night. He was very worried about something happening to me and needed reassurance. His grades began to slip and he became angry. We got very concerned when he lost all competitive drive with his sports and didn't seem to care anymore. We took him to a councilor and we talked. That finally helped. Pete accepted what was going on and one day climbed up on me and speaking to my stomach said, "Hello little baby that is going to grow up in heaven." How beautiful! Abby also talked about her feelings to her friends and teachers and to us and she grieved normally.
Doran and I went to the funeral home to make arrangements. I had called and told them what was going on before going in so I wouldn't shock anyone. I did ok until we looked at little caskets. How horrible. They were so little. Some looked like coolers but there was one... We were told that the hospital also provided that same casket free of charge if our baby died while there. No one had told us that! Even harder was picking out the cemetery plot. We would get 2 plots and Doran and I and the baby would be buried there. As we looked at plots my baby was kicking and moving around. I had to retreat in tears to the van. I can't think of anything more horrific than planning a funeral while still feeling this little life. I also made a birth plan. We wanted no heroics. We wanted our child to die naturally and without pain and to be respected as the human being he/she was. I met with the director of nursing so the hospital would honor my requests. It was no problem I was told. We wanted the kids to be as involved as they could be in this journey. We already had a girls name picked out Janet Ruth, after my grandmother and Doran's mother. Joe and Abby picked the boys name. Joe liked Luke and Abby liked Adam so it became Lucas Adam. We also encouraged them to make or to select something special to place in the casket from them. My mom found a boy's white and blue sleeper that actually had wings and said "Angel Baby" on it. She never did bring me a girls outfit although I begged her to hurry up in finding one. She thought she had more time There was no one to help me with all these arrangements. The doctor didn't give me any info to help, I did all the planning and thanked my nursing background for knowing what to do. I don't wish that on anyone.
On August 8th at 8pm, I stood up and felt a gush. I was leaking amniotic fluid. It was decided at the hospital that since I was at 36 weeks and at a risk for infection that we would deliver then. All night I laid awake anticipating this birth and dreading it knowing that while I would finally meet my little one, I would have to let him/her go also. Hello and goodbye. Luke was born the next day on August 9, 03 at 2:45 pm. It was a joyous birth the same as my other kids. I couldn't wait to find out if this was a boy or a girl. I was praying for him/her to be born alive and to have some time together. Oh I wanted to hold this little one! Lucas Adam was born alive and lived for 45 minutes. He never moved or cried but he did have his eyes open. He had my mouth and his daddy's eyes and long toes! He was beautiful and weighed 4 lbs 10 oz. He died peacefully in his daddy's arms. With our other babies Doran had never cut the umbilical cord but with Luke he felt it was his duty as a father to do so. He knew once that cord was cut that the life support system for Luke was gone and it was just a matter of time. Unfortunately Luke died before the kids could get to the hospital. We let them know that they could see him and hold him if they wanted. Joe did hold him. Abby was frightened of the fact that he was dead so decided against holding him. Jake and Pete both touched his soft skin. Pete wondered where his wings were! Our hospital room was like a party room with kids all over! Father could not be with us because he had to perform a wedding and a funeral so Sister Gertrude came to be with us. She was with us the whole day and almost delivered Luke on her own. She also baptized him. Father finally arrived and confirmed Luke into the church. Everyone left only to have my parents come. Mom had had a hard time with all this and I knew that she was grieving and worried about me. I sensed that she didn't really want to be there so I took Luke and laid him in his grandma's arms. She needed to hold and to rock him and later told me it was one of the hardest and best things she ever had to do. Doran and my parents finally left and Luke and I were alone. I had requested that he stay with me the night. I held him and rocked, sang lullabies he would never hear, sobbed and said my goodbyes. When I was ready I laid him down and slept the best sleep I had had in a long time. In the morning I told the doctor that I was going home. There was no need to stay and I needed to be with my family. The nurse came in with the casket. I cuddled Luke warmly into the yellow afghan I had made him, snuggled him comfortably into his final bed and the nurse took him away forever. Doran and the kids came soon after to pick me up. I refused to ride out in a wheelchair with empty arms so against my nurse's wishes, I walked out of the hospital.
That night I woke out of a sound sleep. One of the kids was standing by my bed and needed something. This happened often. Whoever it was would stand there looking at me until I woke up. For some reason they never touched me and I usually woke up before they spoke so this night was no different than usual. I rolled over and no one was there, yet someone was. I felt him. I think Luke came to tell me he was ok. Then he was gone.
We buried Luke on a bright sunny day. We had a family only graveside service. When we were done the kids let off balloons to go to heaven for Luke. They had a great time competing to see whose would get there first! Then it was done, except it wasn't and still isn't a year later. Luke left us for another place but he is still with us. He brought us so much. Our spiritual faith has been unbelievably strengthened. We have learned the true meaning of unconditional love. I, personally, have learned who is REALLY in control and it is not me! I can accept anything and I can accomplish anything.Our kids know we will sacrifice anything for them. I have found a true community of faith in our church. I will never be able to repay all the people who supported us everyday and accepted Luke despite his diagnosis. These people never saw Luke or felt him but still supported him through me.
I have been called a saint for carrying Luke. I have been told by many that they couldn't do what I did. I am not a saint and you don't know what you can do until you are faced with it. You have to understand that while I carried Luke, God carried me. That is what made the difference. It was not my strength but God's and that strength is available to anyone who asks. The secret is in the asking. Pretty easy! Luke's life was a journey without end. There has been much more joy in this journey than sorrow believe it or not. I miss my baby but he did have a wonderful life. All he knew was love and he accomplished his purpose of being sent to this earth. We try to continue to share his message of God's love for us and our need to accept His plan for our life and not fight against this plan. For those of you starting this journey, you will never be the same, you will be better. It is a hard journey but our babies are more than worth the effort. We don't look back in regret and continue to look up in faith, God Bless, Sue and Doran
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-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.