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Emmanuel John


Emmanuel John, baby with anencephaly

We waited anxiously in the ultrasound room to hear if our new baby was a boy or girl. My husband, Eric, and I brought our three other kids along, we were all very excited to be completing our family with a fourth baby. I wondered if it was taking longer than normal when the ultrasound tech finally spoke up. She said she had some concerns and my heart sunk. She asked if we would like to know right now, or should the kids leave the room? I felt anger well in heart that something could be wrong with my baby, so I told her to tell us now, it was okay that they were in the room. She said part of his head was missing, conditions known as anencephaly and acrania, she wasn't sure which he had.

Before she left the room to speak to the midwife I asked if it was a boy or a girl. A boy. I just began to cry. I was shocked, but not completely, because I was already familiar with this condition. I just couldn't believe that I would have to walk this road.

The following day, Eric and I met with a doctor who specializes in genetics. He gave us another ultrasound and showed us where the baby was missing the top of his skull. The images of his brain floating around flashed repeatedly in my mind. This doctor tried to scare us into ending the pregnancy. He made it sound like there was no other option but to terminate the pregnancy, but since I was familiar with the condition I knew there were options and I knew that there was nothing else for me to do but to love my baby and protect his short life. Every question I asked he answered in a way to build fear in me that it was impossible to carry him to term. He repeated himself that these babies have no chance at life so the emotional toll on me to go to term was not worth it.

Emmanuel John, baby with anencephaly

He kept using the word terminate, so I thought, okay, they will induce me early and I will deliver him and hold him, but no. At the end of the conversation he said "Since you are 20 weeks, the window for terminating the pregnancy is closing. You have until 22-23 weeks in NH and then you will have to find another state." Immediately, I became sick with this reality and thought, he is talking about abortion, not inducing. I will not hold my baby or get to say goodbye to him, he will not know and feel my love for him. I felt the appointment was a waste of our time.

We did learn that since he had acrania it was not genetic, there was no reason for this defect to have happened. I remember going over in my mind everything I could have done to cause this.

I learned that many babies are stillborn during the pregnancy or they are overdue. I found myself praying that God would take him from me early so that I would not have to endure over 5 more months of the pain of wondering when I would have to say goodbye to my son. I calculated the months of when I could have another baby, one who would live.

I wondered, what was God's purpose in making me experience such pain? I clung to what I knew to be true even though I did not feel it at the time, God works all things for good for those who love Him and He is near to the broken-hearted.

The following Sunday Eric was scheduled to preach at church. The pastor told him he could cancel given the circumstances, but Eric had already prepared the message a week before the diagnosis and amazingly, it was a message for our situation. It was the week leading to Thanksgiving so it was centered on a Psalm of thanksgiving.

Things will happen in our lives that we do not expect, desire, control, or understand, but our thankfulness depends on our worldview and nearness to God, not on our circumstances. We are to seek God's comfort and strength and trust that He is good to those who are pure in heart (Psalm 73).

Emmanuel John, baby with anencephaly

I knew for some reason He allowed us to be parents to this baby and I was going to look for His blessings, even if they seemed hard to find.

Carrying a baby that I knew was going to die left me feeling weighed down, as if a dark cloud was over me. I didn't feel a lot of joy, I didn't want to do very much.

We decided we would give him a name that meant something to us. We decided on Emmanuel, God with us, because during this painful trial, we know that God is here, near to us, ready to comfort us. His middle name, John, because God is gracious to us and has done so much for us that we don't deserve.

I spent the next five months trying my best to enjoy the pregnancy. I enjoyed every kick and movement and laughed at his hiccups. I prayed for God to perform a miracle and heal him. I won a makeover package from a salon and had maternity photos taken.

As his due date neared, I had no energy, emotionally or physically. Not knowing what was going to happen was difficult. It was hard having so many questions that no one could answer. Would I have to be induced? Would he be breech? Was he going to live through the birth? Would he live for a few hours? How was I going to feel? What would he look like?

His due date, April 3rd, past. My doctor set me up to be induced Monday, April 7th. Eric and I went in the night before in preparation. They gave me misoprostol, but by Monday night it hadn't done anything. I was afraid if Emmanuel was born in the middle of the night he would die by the morning and my kids wouldn't be able to meet him alive, which I was hoping for. I decided to forgo the induction that night and wait until the morning.

Emmanuel John, baby with anencephaly

Tuesday morning, April 9th, the nurses prepared for the induction. It was a very somber time. When I had a few contractions the pain felt different than my other three natural births, it was a sharp pain and I wondered if it was because he was positioned lower. I didn't think I could handle the physical pain this time since I was already enduring emotional pain. I wanted to be able to focus on him, so I decided to have an epidural for the first time, which I was actually really nervous about.

He was born a few hours after the induction. He had a lot of dark brown, reddish tinted hair. We were surprised that most of his head was covered with skin and hair, something the genetic Dr. said wouldn't happen. He weighed 8lb ½ oz and was 20.5 inches long (no wonder my pregnancy was so uncomfortable, he was a big boy!).

I was in shock to be holding my baby that I was going to have to say goodbye to. I just couldn't believe I was in that position. How could he be so perfect in every way, but be missing such a vital part of his body?

Our kids came and were excited to be meeting their new brother. They didn't notice his imperfections. They smiled and giggled and loved holding him.

The next few days did not go anywhere near how I would have thought, or how I tried to "prepare" myself for. There is something about the fear of what could happen that adds to the pain. The hospital staff treated us amazingly and took care of every need we had. Photographers from Now I Lay Me Down to Sleep came.

The nurses changed his bandage and he cried so hard. Hearing his cries broke my heart, but those cries were also a comfort to know that he was in pain in that moment but the rest of his life he was content and pain free. During the night, the nurse came to check his heart beat. They allowed him to sleep in my arms and he slept real well.

Emmanuel John, baby with anencephaly

The next morning he was still alive, breathing and doing well so we decided to have visitors, friends, family, and our pastors. We did a lot of hand and foot prints, took lots of pictures and my friends bought clothes for him since I had only brought one outfit for him. I even fed Emmanuel, nursed him and gave him a pacifier.

By the end of the day I was completely exhausted. Emmanuel woke up several times in the night making noises, so I didn't sleep well. The following day we decided we didn't want to have any visitors. We just wanted to hold him and get rest. The nurses gave me sleeping pills so that I could sleep a few hours. It was a foggy sleep, because I was fearful he would die when I wasn't paying attention.

He was living on day three, something I never even really considered would happen because it is so rare. I was feeling very emotional. I thought it would have been easier for him to die sooner, not that I wanted my son to die, but we knew his death was imminent and now the pain was being prolonged. I had read what could happen when babies live several days and I feared the future. We finally met with a pediatrician who explained that of the babies with anencephaly who are born alive, 80% die within 24 hours, 15% live to day three and 5% live past day five.

Day three is the day mother and baby are supposed to leave the hospital, but I just didn't think I could do it. What will I do when he dies, without the support of the nursing staff?

By the end of the day after getting rest I was feeling better and decided we should go home the next day.

Saturday morning, April 12th, we decided today would be the day to be discharged. Looking back, I would have left the hospital sooner if I had known he was going to live as long as he did. I was very motivated to leave the hospital. I thought if he dies before we are discharged I am going to be devastated. My mindset changed and I really wanted him home with his siblings once again. The hospital had given us a car bed to lay him in. We made it to the van and I was relieved.

Emmanuel John, baby with anencephaly

Our older kids were very excited to have him home, but it was deceiving as they didn't think he was supposed to come home. We spent our time snuggling and taking pictures. That night I slept with him next to me. I woke up to every little noise he made. The following morning, our kids ran into the room with smiles on their faces excited to kiss and hug their baby brother.

We had a hospice nurse come change some of his bandages. Shortly after that things began to go downhill. I noticed that anytime I moved him a little too quickly he acted as if he was startled, however, after what I had read, I knew that he was actually having little seizures. He was dying.

I just knew it was going to be his last day of life, and there were still pictures I wanted to take in his special "Mommy Loves Me" outfit. So carefully, I changed his clothes and took as many pictures of him as I could before he declined more. These are the last pictures I have of him alive and they are the ones I treasure the most. He looks so perfect.

I put him to bed that night in a bouncy seat because the night before he rolled towards me, which made me nervous. A few hours after putting him to sleep, I awoke realizing I had just slept really deeply, I never woke up to any of Emmanuel's noises. I checked him and that is because he was gone. I laid there in sorrow, the baby I cared for the last five days was dead. I was sad that his mommy wasn't snuggling him in his final moments, I thought, what if he needed me?

You try to prepare and plan as best you can, but really nothing can truly prepare you for saying goodbye to your child. My whole pregnancy I irrationally thought that maybe once he dies I will feel a sense of relief, that the pain and the unknown are behind me, but unfortunately that relief is not real and it never comes. The sadness intensifies. All the illogical thinking I had done for another baby was insignificant, because now I didn't want another baby, I wanted my Emmanuel, Manny, as we nicknamed him for the kids.

Emmanuel John, baby with anencephaly

I felt so alone in my grief. He was my son, no one else loved him the way I did. No one was thinking of him all the time like I was. It was a very lonely time which added to the grief.

The funeral home picked Emmanuel up before we told our kids. I didn't want their last memories of him to be of his lifeless body. We decided to take the kids somewhere fun so that we didn't end the day on such a sad note and as we were getting ready to leave the kids all said, "But we can't forget the baby! Where is he?"

After explaining what happened to them, our daughter who was three at the time showed her emotions the most that evening. She mentioned several times that she was not able to say goodbye to him. I was regretting my decision not allowing them to see him one last time.

I didn't like bearing my emotions for all to see, so I wasn't originally sure if I wanted hospital visitors, a funeral, guests at his burial, or a video slideshow. We decided to do what we felt we could handle for our family.

We had his funeral on Wednesday, April 17th and a luncheon to follow. We were able to see him one last time and place some special keepsakes in his casket. Our kids were excited to see him and kiss his cheeks one last time. I was relieved that they didn't notice he didn't look the same. I thought they could understand that he was gone and this was our final goodbye but a few hours later, when we were leaving the church they were very concerned that we were leaving the baby behind and wanted us to go get him. There is really no easy way to explain to your other children that their baby brother is gone forever.

Emmanuel John, baby with anencephaly

The burial two days later on Good Friday. Although it was not planned that way, burying him on Good Friday, the day of Jesus' burial, was a reminder of death not being permanent, that we will see and hold Emmanuel again one day.

Even though there is so much pain in losing your baby, there is also much hope and peace in holding him, looking at him and telling him you love him. There is beauty in knowing that in my son's entire life he knew nothing but our love for him and for this, I would not change a thing.

Emmanuel John has three older siblings, Caleb, Anna and Luke and a little brother, Noah John.

Emmanuel's Slideshow



Last updated April 2, 2019