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Joseph Jerome, baby with anencephaly

There are 3 dates that will remain etched on my heart forever. July 30, 2004 The day I found out I was pregnant, October 22, 2004 The day we were told our baby had anencephaly and March 23, 2005 The day our precious Joey was born.

Ken and I had been married nine years and had tried for 8 of those years to have a family. We had decided to leave things in God's hands and we were very lucky to find out we were expecting. Seeing the I was 42 and Ken was 43, we felt that parenthood was probably not going to be in our future, but I guess there were different plans for us.

We were elated about the pregnancy and so were our family and friends. It's amazing how quickly you process time through the doctor visits. Each week that went by, made me realize that this was not a dream, I was truly pregnant and we were going to be parents. We were able to see a heart beat at 7 weeks and hear one at 12 weeks. At my 16th week check up, I again was able to hear the baby's heart and my belly was beginning to swell.

Due to my age and concern with possible birth defects, I was scheduled for a level 2 ultrasound at 17 weeks. Ken and I were so excited, we took the day off of work and planned on having lunch and running some errands. We brought along a VHS tape to record the baby's movements and the ultrasound.

Everything seemed to be fine with the examination. We could see the baby moving and the heart was beating like crazy. The intern doctor that was working with us had to step out of the room and told us that Dr. W. would be in shortly to perform another ultrasound. Within minutes, Dr. W. stepped into the room and started the procedure. It seemed like within seconds he turned off the ultrasound machine and told us, "I have some terrible news about your baby. Your child has a fatal birth defect that is not compatible with life. It is called anencephaly."

I could not comprehend what he was saying. I just saw my baby's heartbeat and move all about the screen and now I was being told that my baby would not live. It didn't make any sense to me. Dr. W. left the room and gave us a slip of paper with "anencephaly" on it. We asked if he could tell what gender the baby was and he said, "Yes, it's a boy." I remember Ken crying and I was still stunned with all of the news. I could not process all of the information and felt like I was in a dream.

Luckily, our OB/GYN doctor was in the hospital at the time and came to talk with us. Dr. L. told us that we did not have to make any decisions. We have just been given terrible news and need time to process it. His main point was that my health will not be compromised by anencephaly.

We spent the weekend pouring through resources related to anencephaly and cried a lot. Any time that either of us was able to get some sleep, we would awake and think that all of this was just a bad dream. And then we would realize, this is really happening.

The thought of terminating the pregnancy never crossed our minds. We kept thinking that this might be our only child and both wanted to hold, touch and kiss him. There was even a small amount of hope that the diagnosis could be wrong.

Lyn kissing Joey's hand

As terrible as the situation was, we met many people along the way who provided us with comfort, support, love and advice. We did our best to make this a normal pregnancy and spent time discussing and preparing for Joey's birth, life and death. The hospital were Joey was to be delivered treated us like royalty. We met several times with a nurse to prepare a birthing plan and to see more ultrasounds of Joey. She gave us some ideas on how to make lasting memories and how to plan the funeral. Our priest was able to give us spiritual guidance and also help with funeral arrangements. Instead of preparing a nursery for our baby, we were preparing him for everlasting life.

As Joey's due date approached, Dr. L. felt it best to set a date to induce labor. We trusted his judgement and arrived at the hospital on March 20th, 10 days prior to Joey's due date. Joey had other plans for us and decided that he was going to enter this world when he was ready. The first day of induction, very little progress was made. I dialated to 3 cm. and had lots of symptoms of labor, but after 12 hours – it was decided to stop the pitocin and let me get a night of rest. The next day we started again and not much occurred. During an examine in the late afternoon, my water broke and then the contractions really started. I was at 7 cm. and it appeared that Joey was going to greet us shortly. I elected to get an epidural for the contractions and was able to relax and prepare for the birthing process.

I noticed on the monitor that Joey's heartbeat was really fast. I asked the nurse about this and she said that in a "normal" situation, the doctor would perform a c-section. (During our many visits with Dr. L., he told us that unless my health was in danger, he would prefer to have Joey be delivered vaginally. The recovery time from a c-section is longer and more difficult than a vaginal delivery and he felt this would be the best for us.)

Around this time I spiked a fever and had the chills. Just another symptom of labor, but had this been a normal situation, again, a c-section would have been performed. At about 7:30PM, my cervix was checked one more time and I was now at 9 cm, but could easily be stretched to 12. The birthing process was going to begin. It took another 5 hours before Joey was born. He had very broad shoulders and kept getting stuck in the birth canal. I could only push him so far. Dr. L. told us that he would like to use forceps but he told us that this might compromise Joey's life. We understood what he was telling us and felt that it was time to meet Joey, alive or dead. We placed our trust in God and wanted to meet and hold our son.

At 1:15 AM on March 23, 2005 – Joseph Jerome Deiss was born. I have never experienced a more calm or peaceful moment in my life. When I looked at his face, I knew him forever. He was my child, my son, my Joey. I felt so much love and joy that his passing wasn't even a consideration. Joey was here – all those months of anticipation were over and my precious gift was in front of my eyes.


Joey was greeted by his grandparents, aunts, uncles, cousins and friends. We were exhausted, but elated to show our son to all. He looked like such a warrior. His eyes, nose and lips were very swollen and black and blue, due to all the pushing through the birthing process and he had a small abrasion on his cheek from the forceps.

We captured as many memories as possible with pictures, hand/foot prints and hair samples. We kept the outfit that Joey wore in the hospital and placed it in a Ziploc bag. We occasionally open it to catch a whiff of Joey's smell.

On March 25th, the funeral home personnel met us at the hospital to pick up Joey. That had to be the hardest moment in my life. I knew then that I was saying goodbye to my son and only my memories would sustain me. Joey spent every minute with us from the time that he was born until that morning. We held him, kissed him, looked at him and treasured every moment. I am so grateful for the pictures we took.

There are days that I wonder if this really did happen or is this a bad dream. I keep little memories of Joey all around me. Knowing that I am being watched by my son has helped me become a better, stronger and more giving person. Joey taught me more about life and love and he never even took a breath. What an incredible baby – that's my boy!




Last updated April 8, 2019