Diagnosis: Alobar Holoprosencephaly

By A Grieving Mother

The majority of my life I've wanted to be a mom. It took my husband and me a while to get pregnant, so when we finally did, we were overjoyed. I threw up everyday, sometimes multiple times, but I was told many times that means a healthy baby, so I didn't mind. It was worth it.

Our 20 week check up came around, the big ultrasound where they measure the baby head to toe. We were called back to have our ultrasound. The technician didn't lead onto anything being wrong. Then we were sent into another room with our midwife. When the tech walked in and said my name I knew something was wrong. She said,“We see something wrong with the baby’s brain.” I immediately started praying for a miracle - that maybe their machines weren't the best and that they were just mistaken.

We were sent to a specialist across the street immediately where he also measured everything and looked at her brain. When he was done, he looked at me and said, “I hate to tell you this, but your baby has something called alobar holoprosencephaly, a fancy term for saying your baby’s brain did not form. Incompatible with life.” He said that she would only live a couple hours after birth because she wouldn't know how to breathe or eat on her own. “We don't know why you didn't miscarry. This is very rare to happen. 1 in 10,000 chance.” Our world stopped. We broke down. We asked, “Where do we go from here?” He responded with, “I have seen this before, and if I was his wife, he would tell me to terminate.”

That word is awful. How could this be happening! He gave us three options: 1. I could try to carry her to term, but she might not make it. 2. I could be sent to the hospital where I would be given an epidural to deliver her, awake. We'd be able to take pictures with her and hold her at 21 weeks. Or 3. We could be sent to a women's clinic in Atlanta where I would have a D&E and be put to sleep. It would be a two day procedure.

We went home where our family was waiting to pray, hug, and cry with us. I called my uncle who is a preacher -- the man who performed my husband and my marriage. I told him about what was going on and the decision we had to make. We cried together, and he told me if we made the decision to end the pregnancy it would be a gesture of love. We didn't want our baby to suffer. We only had a couple of days to make this decision because I was so far along. This was the hardest decision of our life, a decision I wouldn't wish on my worst enemy. I knew I wasn't strong enough to see her and be in the hospital surrounded with healthy babies. We decided that I should be put to sleep through both procedures, and then we made the appointments. I had to wait a week in between getting her diagnosis and the first day of the procedure. Every morning I woke up and I just laid there crying and held my stomach feeling her kick, telling her how much we love her.

The day before the first procedure I made another appointment with my midwife to have another ultrasound to make sure, to have a peace of mind. Before my mom picked me up, I fell to my knees praying and cried to God asking for a miracle that the ultrasounds would show her brain being perfect. I felt his presence around me so strongly. I knew he was carrying us through the toughest time of our life. We got to the doctor's office where I hugged and cried with our sonographer and our midwife. We talked about our daughter's diagnosis and our decision. They showed us on the ultrasound where her brain was mostly fluid, that it didn't form correctly. They told me it was nothing I did but that it just didn't structurally form.

We had to be at the clinic that Thursday morning at 8am, where, when I walked in the front door, I was being yelled at by protesters because this was an abortion clinic. Could this nightmare get any worse? I thought this clinic was a professional medical facility where women with cases like mine go and are not surrounded with women wanting to get rid of their babies. I was called back where I would be bounced around from room to room, from a therapist, to talking over my medical history. I was alone - they wouldn't let my husband or parents back there.

The man that was going over my medical history asked me if I was going to get on birth control. When I answered no, he asked if I was going to use condoms. I wanted to smack this man so hard! I sternly said no, my baby has HPE (holoprosencephaly.) He quickly apologized. I was treated like a number. I was told by the therapist that they were going to inject a shot in my stomach to stop my daughter's heartbeat. I lost it. how could this be happening? Why didn't God make this decision?! Why didn't I miscarry? Why did we have to make this unspeakable decision?

I told the therapist to make sure I was asleep for both days. About an hour later I was called back for the procedure. They put me on the O.R table and told me I wasn't being put to sleep. I bawled and begged to be put to sleep. I told the very rude lady that I had requested to be put to sleep. Ten minutes later the anesthesiologist came in and put me to sleep. They inserted Laminaria into my cervix so I would dilate to ten centimeters overnight. I woke up in the recovery room and was sent home fifteen minutes later. When I got home, I went to bed and cried. I couldn't feel her move, and I knew she was gone. I felt like the worst person ever.

We had to be back at 7am the next morning. When we got there, they immediately called me back where I had to change. They rolled me in the operating room and put me to sleep. I woke up in the recovery room again and after fifteen minutes was made to get up and change. I bled all over the floor while I walked to the the bathroom and just stood over the toilet bleeding. The nurses rushed me back to the OR table where the doctor was. He inserted a balloon inside of me to hold pressure, but the anesthesiologist couldn't put me back to sleep because I ate two crackers with my pain medicine. I don't remember much, but I do remember him putting something into my IV, seeing a lot of people rushing around me and a lot of bright lights over me.

The anesthesiologist was sitting at the head of the OR table trying to keep me awake. I was losing a lot of blood. He told me the ambulance was downstairs and they were going to put me on a stretcher to take me out. I remember people yelling before the EMS took me out to hide my face and hold sheets up because the protestors were trying to take my picture. The whole way to the hospital I was in the worst pain. The EMS gave me a pill to not remember anything and I don't. By the time I woke up my whole family was at the hospital, which was a good hour away. They kept me there all day; they were trying to decide if I needed to have surgery and ran some test to see if I had disseminated intravascular coagulation (DIC). I had to get the RH shot within three days because I have 0- blood. I was released around 10pm.

The following Sunday was Mother’s Day, and my milk also came in. I had to deal with my body thinking I just birthed a baby. I tried cabbage leaves, a tight sports bra, and ice. It didn't go away for about two weeks. The following Tuesday I didn't feel good, but I thought it was just from the procedure, so I took my pain pills. The next day I didn't feel good again, so I made an appointment with my midwife to just make sure everything was okay. When I got to the doctor's office she took me back immediately into a room where I changed into a gown, she came in and talked to me about everything that had happened. She then found two foreign objects that had been left inside of me. She sent me to have another ultrasound to make sure everything looked okay.

I have never felt so empty in my life. I have never felt so guilty. My heart aches. I don't remember what it feels like to be pregnant. I know you aren't supposed to ask why, but I have many times. I will never understand why God has used my husband and me to go through this, but I'm trusting that God has a bigger plan for us. He gives me strength to get up everyday.

About a week after the procedures, I had a dream that I saw our little girl, and I got to talk to her. She laughed and smiled at me. She was beautiful. I was telling my aunt about my dream the next morning. She has a son that passed away from cystic fibrosis. She told me she also had a dream that same night where she saw my cousin, and he told her our baby was fine. I believe God speaks to us through our dreams.

We are blessed with a great family and friends that have been with us every step. We are blessed to have such a supportive, sweet group of ladies at our doctor’s office. We are blessed with God's promise that we will get to see our baby girl and spend eternity with her. I am blessed I got to carry our precious girl for 21 weeks. I am blessed I have my husband, who is so good to me. He makes me a better person, and one day we will try to have more babies.

Thank you to everyone that has prayed for us. We will never get over this or understand it, but we will learn to live with it. I hope our story helps at least one person that has gone through or might go through what we did.

Jeremiah 29:11 - “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”


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