Beyond Imagination

Oct 29, 2014 | Alobar Holoprosencephaly, Induction/L&D, Stories

Although he isn’t physically here, in my heart he always will be.

By Stephanie B.

I’ve faced the heartwrenching choice between watching my baby die or ending his fight. I chose to have a medical termination where I had to deliver my baby. While I never thought I’d terminate a pregnancy, this was beyond imagination.

On 18 September, 2014 I went for my 12 week scan at QE2 in Welwyn Garden City. I was so excited that I had been counting down the days until that day arrived. In the hospital waiting room I was surrounded by other woman,and we were all smiling because we were about to see our little babies growing and developing inside of us, their little hearts beating so helplessly. Little did I know this was going to be the moment that my life changed forever.

I rolled up my shirt and lay still as the midwife went over my tummy. I was thrilled to see my little boy moving around. But then the midwife’s expression changed. She asked me if I would mind her doing an internal scan on my baby, and I agreed. As this was my first pregnancy I didn’t know whether that was routine or not. Then she stopped scanning and said, “There is an abnormality on your baby’s brain and it looks rather severe.”

Everything was a blur to me. I was sent straight to a hospital in Stevenage where they confirmed the diagnosis as alobar holoprosencephaly. I’d never heard of this condition and didn’t know how serious it was.

Three days later I saw my specialists in a London hospital. I held onto a little bit of hope that they would turn around and say the diagnosis was all wrong. Instead, they confirmed it for the third time.

Alobar Holoprosencephaly affects one baby out of every 7,500. There are different types of holoprosencephaly, but George’s case was the most severe my doctors had seen. Doctors still do not know why it happens other than that it’s related to chromosome deficiency; during the early stages of pregnancy the fetus does not develop correctly and the separate halves of the brain are not formed.

They asked if I had considered what I was going to do. I had no idea. My head thumped as I tried to process every bit of information I’d heard within the last four days. They said I could continue the pregnancy with only a 3% chance of my baby making it full term, or I could end the pregnancy with a medical termination. I felt certain I wasn’t going to end his fight. But then they explained that he would never be able to eat or drink by himself and that he may not even survived for 24 hours following birth. They said I would never get to bring him home.

My heart broke. I pulled the midwife to the side and said, “I’m going to have to let him go.”

Within four days I was booked back into Stevenage, given suppositories and induced into labor. When my water broke I sobbed to the midwife. “He’s not ready yet!” I knew what was coming.

After an hour which felt like forever, my baby George was born on the 27th September at 23:05 PM. I counted his little fingers and toes, crying how sorry I was that it had to come to this. The midwife took him away and I was left as a mother with no child.

His funeral was on the 15th October. I felt empty and I couldn’t believe he was actually gone.

I joined a ARC web forum for bereaved parents, and the ladies there were my true inspirations. ARC became my lifeline as never before, a safe place where people would not judge me for the choice I made.

After I came out of hospital I could not bring myself to eat, and sleeplessness was a great issue of mine, but in time it is slowly getting better. Although the doctors said I’d never get to bring my baby home, in a way they were wrong. I collected his little box of ashes and now he can stay with me forever. Although he isn’t physically here, in my heart he always will be. There is a cord that connects us which cannot be seen, but cannot be denied.

Nobody can tell you what life has planned for you; nobody can tell you what is coming. Knowing that I let my baby go so he can play freely is the only thing I keep in mind. He has a September tree at Harwood Hill Crematorium with his first teddy bear and balloons. Even though he isn’t here with me this Christmas he surely is in everybody’s hearts. He taught me a lot along my journey and for that I thank my little baby for making me a better person and teaching me things I didn’t think that I could learn.


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