During my pregnancy I was very scared. I was a good student and tended to be the shy and quiet one. I hid my pregnancy because I was afraid of disappointing those closest to me. I ate well and did what I thought I needed to do. It was not until I was 8 ½ months along until I skipped school and went to the doctor’s office because I was afraid I would start labor in school. It was a very hard decision but I was really considering adoption. I knew I could not support her and her biological father left me once I told him I was pregnant. I did not think I was not ready for the responsibility.
On September 15, 2000 I told my then boyfriend that I was pregnant and that it was not his and that if he did not want to be with me that was okay. I really did love him though so it was heartbreaking to have to tell him that. At that point he hugged me and said that we can do this and that he would stand by my side. I was still trying to decide what I should do but did not understand the urgency of my situation.
On September 16, 2000 at 7:00am I went into labor 2 weeks early. I hadn’t even told everyone that I was pregnant. The sonogram showed that she was breech so I ended up having an emergency c-section. I was all by myself lying on the table with my thoughts when I heard a cry. I can remember saying “That’s my baby” “I have to keep her”. I didn’t get to see her and I thought I was too late to have her as my own. I remember waking up after recovery and telling them “I want her and her name is going to be Brianna”. She was a healthy 5lbs. 6oz. beautiful blue-eyed baby girl and she was mine.
We had no plans but quickly rallied up supplies and had a tremendous family support system. I turned my cds into diapers and our lives were forever changed. We were on a different path than I thought our lives would ever take us but we were happy and we made it work.
Fast-forward five months. My then fiancé’s mom says “I don’t think she can see”. I didn’t believe her but it probably was because I didn’t know any better. She encouraged me to get her into the doctor which was when we were referred to an eye doctor. At the eye doctor she was diagnosed with Optic Nerve Hypoplasia. We were told that it is something that can be grown out of so we were still pretty optimistic. I wear glasses so I didn’t think it was that big of a deal. He did suggest we get an MRI done just to be safe.
On March 29, 2001 Brianna had her first MRI. Some time shortly after we saw the neurologist to get the results. That day will be forever etched in my mind. It was me, my fiancé, and his mother at the doctor visit. He put her x-rays up for us to see. That was the first day I heard of hydranencephaly. That was also the single most heartbreaking day of our lives. It was this very grim prognosis and the doctor offered up nothing positive to us. He said it was just a freak accident of nature and that most of the time these babies get aborted by choice or naturally. He told us to take her home and love her and not bother scheduling our next appointment because she won’t even live six more months.
The first year was the hardest. I lived in constant fear that she would leave us in the middle of the night. I had terrible nightmares. She cried most of the time and there was very little to do but for me to hold her. I never let her leave my sight. After the months went by my grieving for her changed to fighting for her. I realized she was still here and knew there was a reason. Our journey began to rewrite the books. I would not take no for an answer and knew I had to do everything in my power to convince doctors and therapists that my child was worth it. One by one they started coming around. That first neurologist though was only seen many years later just so I could confirm with him that maybe he should change a few things about how he presents himself to families. That felt really good. Now they listen to me and ask me what they need to do to give her the best care that she deserves.
I wish that at that moment of learning of her diagnosis we would have been told that there was hope. There are so many more resources and support groups now than there were when Brianna was first diagnosed. We felt so alone and that we could do nothing for our precious little girl. It is hard to believe that doctors in general do not know much more then they did back then. There is hope though and I see it everyday when I log onto my computer and have conversations with other families that have children that share the same diagnosis. When I look into Brianna’s eyes I know that there is a reason she is here and every child born with hydranencephaly deserves the same chances that we have given her.
She has had some issues with health but none has been a harder battle than the one with her GI tract. Brianna has been on medication for her stomach and bowels since she was two months old. She was always irregular and had problems with intestinal bloating, blockages, acid reflux, digestion, malnutrition, and her latest battle with c-diff. She had a g-tube placed when she was seven. We mainly administered her medications and fluid through it for four years. When we almost lost her to c-diff, she just turned eleven, all I knew that is we wanted her to be around longer we had some changes to make. We stopped feeding her orally as she was choking a lot. We put her on continuous feed. She has had this diet with no additional harsh medications for a couple months and is doing better than she has in her whole life. Her GI tract is regular and she no longer needs my help; everything just works. She is also finally gaining weight.