Emery's Story, by his mama

Post by Ashley

June 21st 2012 I went to the doctor, scared to find out that the reason my hormones were rising was because I had a form of cancer and would be needing chemo. It was a stressful few days since getting the news that my HCG levels were 20,000 from the 2 which is was last month. I had been monitored regularly since January when I had a molar pregnancy, if it came back on its own it meant I would be needing chemo. Imagine my surprise when the ultrasound showed a baby, instead of the cancer!! As the doctor left the room telling me I was 6 weeks and 5 days pregnant I began to dance around the room. I didn't need chemo and I was giving my 4 year old a sibling, what GREAT news! I called my family and told them, it isn't the molar pregnancy, it is "a normal pregnancy" little did I know how far from normal things would be.

My pregnancy went along normally and I was so thrilled to share the news with my daughter. As time went by I had no reason to believe anything was wrong. I listened to my baby on a doppler we rented and about 13 weeks I began feeling "flutters"(the baby first moving). I knew my baby was in there safe and sound and growing well. At 18 weeks I had a doctors appointment, which I had scheduled for our 3rd wedding anniversary. I begged the doctor to tell us the sex of the baby and she reluctantly gave us an ultrasound. There was my bouncing baby doing the splits! We got such a strange view but she said she thinks it is a boy, but is still earlier then she likes to tell, so wait until my "official" 20 week ultrasound to make the announcement. I knew what I saw though, it was definitely a boy, weird angle or not! I was so happy I have always wanted a son and he would be the first grandson on either side!
The following week I got a phone call from the doctors office. It wasn't a normal thing and I frantically tried to call back! I didn't get ahold of anyone so I called again first thing the next morning. Finally I got a call back, she said my regular doctor was out of the office but it looked like she was calling about test results. She said that the blood test I had done came back abnormal. It meant my baby was at risk for having a brain or spinal defect. She told me not to worry because it was only 70-80 percent accurate and it could still be nothing, and scheduled an ultrasound for that night. I hung up the phone and panic sat in. The previous week I had done a blood test to check for down syndrome, I had forgotten about it because I figured it was a waste of time. I honestly had no idea they checked for anything other then down syndrome and I frantically began researching. I called my parents and in laws and told them and they all came down for the ultrasound.

That night I brought my daughter to my grandparents and left her with them and my brother and the rest of us headed to the doctors office. We get there and get back into the room, I am watching the screen as the doctor looks down the spine of my baby, nothing looked weird, so I am thinking ok it isn't spina bifeda. The room was silent and I asked, can you tell if its a girl or boy? trying to break the silence. He said I think its a boy, but I am having a hard time seeing his head. Thats when I saw it. I had looked up ultrasound pictures of all the things that could show us as a brain or spinal defect. My son looked exactly like the other ultrasounds of anencephaly babies.

The doctor ended the ultrasound and said I am sorry to tell you, I think your baby has anencephaly. I knew it, I instantly felt like it was hard to breathe. How is it that something I had never heard about 12 hours before suddenly be throwing my whole life into a tail spin? My mom was the first to speak, she said "what exactly is that?" I turned around and said it means he is going to die. Everyone started crying. Looking back I probably shouldn't have been so blunt about the way I said it, I just didn't know how else to do it. My husband was the only one dry eyed, holding me tight, but I could see the fear in his face. They set up an appointment with me for Monday the following week with a specialist (this was Thursday).
At the appointment with the specialist we all went into a small office where a nurse did an ultrasound. She looked at every part of him and made sure his whole body worked correctly, it was so hard to know that everything was perfect and worked exactly right but his skull was missing and he would die! After the ultrasound we went into the doctors office. He told us most likely it was caused because when his skull was growing it didn't close for some reason and the amniotic fluid had crushed it, which then prevented his brain from growing. I told him we decided to carry him to term and the doctor told us he may not make it to term, and if he did organ donation wouldn't be possible because they cannot legally declare anencephalic babies brain dead. It didn't matter, I wanted to love my son, hold him kiss him and see his face!

The rest of my pregnancy was spent enjoying our time with him. We had 3d ultrasounds, painted my belly, and took maternity pictures. We talked to him and loved him. I ate the foods that would make him wiggle most and every morning I spent quietly listening to music, just him and I. He had the hiccups a LOT, it was hilarious! My pregnancy with him was wonderful. Holiday's spent while I was pregnant became Emery's holidays. Halloween he got his own pumpkin, Christmas he got his own presents. We knew those would be his only holiday's with us so we made sure to include him and to make them extra special.

Also during my pregnancy I had an "angel shower". I asked everyone who came to bring poems, or letter or songs, anything they felt applied and we worked on scrapbook pages for him. It was one of the most amazing thing I can hold onto from that journey, is pages made from family and friends, it is beautiful.
Another part of my pregnancy with Emery was spent planning for his death. Most people stalk up on baby things and get a nursery ready, I spent my time finding burial gowns, the clothes he would wear during his time with us. Speaking to funeral homes and finding an urn. It was such a sad thing to do while feeling my otherwise healthy baby boy bouncing around!! In a way though I am thankful. I am thankful to have had time to grieve while he was still here to talk to and to squeeze. I think preparing while I was pregnant helped me accept the reality of saying goodbye.

February 9th was my due date. I talked to my midwife about inducing me though. Some of the time mom's of anencephalic babies do not go into labor on their own. Plus I liked that I was able to plan ahead so all of our family could be there, since we had no idea how much time we would have with him. My midwife set my induction for February 4th, but wanted me at the hospital at 11 pm the night before. 61 and a half hours after my contractions started my son Emery was born. February 6th 2013 at 11:55 am. He was born with his heart beating but never took a breath. His strong little heart continued to beat for 11 more minutes. We were able to spend the whole rest of the day with him. Family got to hold him and we took tons of pictures and got handprints and footprints along with other keepsakes. 11pm that night the nurse came in and told us she had to take him. Normally I would have had as much time as I wanted, but we were surprised to have found out we were able to donate his heart valves! In order to be able to do the donation 11pm was the latest he could stay with us. When the nurse walked out of the room with him my husband went to hug me and ended up catching me because I would have collapsed on the floor. Letting my son go that night was the hardest moment of my entire life. I enjoyed every second I spent with him and suddenly it was over.

The 8th, we went to the funeral home. We filled out all the paperwork and then got to see him one last time. We dressed him is his specially made gown, made from part of my wedding dress. And my husband tied on a tie, which was the tie he wore at our wedding. Emery looked so handsome in his suit and tie. We each held him one last time before we put him back into his bed (they had a special Moses basket bed for him).

I miss my son every day of my life. He taught me about life and love and I am so thankful for his life. Carrying him to term was the best decision I ever made. I got to see my son, hold him make him a part of my life.


Emery Iris born February 6 2013