My pregnancy with Gabrielle wasn’t “magical” like everyone told me it would be. I actually didn’t even think I could have children. I had a lot of tough days that I didn’t think I was going to get through while pregnant. During my second sonogram the ultrasound technician found that Gabby had a Single Umbilical Artery. That meant we had to see the Perinatalogist monthly and have weekly sonograms done to check her growth and ensure she was getting enough blood through her cord. The doctors appointments were always stressful because they always seemed to find something wrong. The Perinatologist explained to me that with a SUA the risks of genetic problems such as Down Syndrome and other Trisomies were high. At one point I was asked if I would want to “terminate” my pregnancy. Of course, the thought never crossed my mind and I was more than a little upset that they thought that was an option.
During my sonograms they noticed Gabbys head was on the small side and that concerned her doctors. They monitored her very closely but never found anything drasticallly wrong. They chalked her small head up to “bad angles” or “the wrong due date”. This was every month for the entire pregnancy.
Two weeks before delivery during one of her many non-stress tests I noticed the ultrasound tech lingering a little bit longer on Gabbys face. She claimed to be doing so to monitor her breathing. This was actually very odd to me because they have never, in all her tests, monitored her breathing by looking at her face. They always did so by watching the intake in her abdomen. A few hours after leaving the ultrasound my doctor called me. He advised the Radiologist may have seen a cleft lip but he couldn’t confirm. I was furious. Up to that point I had hundreds of photos taken of my baby girl and they found it TWO WEEKS before delivery. How was I to adjust to this? I had already pictured my daughter a thousand times in my head. How she would look, her hair color, her beautiful face. How could I look at my baby with a cleft lip? Would I love her the same? Those thoughts made me feel even worse. They made me feel like a terrible mother. How could a mother feel that way about her unborn baby? I was so scared.
August 29, 2011 I was induced. Twenty-six hours later at 8:50 pm on August 30th I gave birth by emergency C Section to the most gorgeous baby girl in the world. 8 pounds 3 oz and 21 inches long. How could I have possibly felt the way I felt before? The love that I have for her far surpassed every feeling I’ve ever had. She was my gorgeous baby. The most beautiful face, beautiful eyes and beautiful smile!
A month after she was born she was taken to meet her cleft team. Gabby was born with other abnormalities that seemed to concern her doctors. Aside from her cleft she was also born with a Bicornate Uterus, pixie ears, and a few other small midline defects. They sent her to have an MRI done and to see an Ophthamologist. Her eye appointment went just fine but her MRI scans came back to show there was a problem with her brain. We didn’t actually learn of her brain defect until our second appointment with her surgeon. We went for a consultation about her lip and thats when we were told Gabby had Holoprosencephaly (HPE). Her surgeon said it so casually as if it was nothing. Even when she said, “Most babies don’t make it through infantcy but we can make sure she looks pretty”. It was like she was telling us she had a cold.
My boyfriend and I were ataken back. “May not make it through infantcy”. How could that be possible? How could she say it like it was nothing? We left the surgeons office in a daze. It didn’t even sink in until we were in the car. I cried the entire car ride home. When we went to her pediatrican appointment he agree’d with what the surgeon said. Most babies with HPE don’t make it. In fact only 3% of babies even survive birth. I was complelely heart broken. There was no way my baby could possibly not make it. It wasn’t an option. It still ISN’T an option. After a rough pregnancy we find THIS out and I still can’t believe it.
About a week after we found out her diagnosis we had a sit down with her Neurologist, Dr. Jennifer Yuen with Childrens Mercy Hospital in Kansas City. She elaborated on Gabby’s condition. She has Semilobar Holoprosencephaly but she did NOT give Gabby a one year death sentence. In fact, it didn’t even come up. Now, I do realize that with HPE every child is different. Every brain is different. Dr. Yuen explained to us that with Semilobar HPE the brain, during the 5 or 6th week of pregnancy, did not split into two hemispheres correctly. The front part of her brain is still semi fused together where the back of the brain seperated normally. This is why in all of her sonograms they found her head size to be too small. The brain just didn’t grow out and forward so neither did her skull.
The symptoms that come with HPE vary widely depending on each individual child. With Gabby we are starting to see some of them now that she is 3 months old. She has a lack of interest in eating, she startles very easily and sometimes has trouble falling asleep and staying asleep. Beyond that she seems to be a “normal” (for lack of a better word) baby. She holds her head up, she stands up supporting her own weight (with a little help from mom and dad), she tracks with her eyes, giggles and in general is a very happy baby. As she grows she has a 3% chance of ever walking or talking but we remain optimistic. The fact that she already holds her weight gives us Hope.
We take baby steps one day at a time. Her cleft surgery is scheduled for February 15, 2011. She will be five months old. The thought of her going under scares me to death but I know it’s for the best. We keep an open mind and think positive. She is the most beautiful, happy, amazing baby and is the glue that holds me together. She is the reason I live, breathe and get up every morning. She is the love of my life and my gorgeous, smiling, baby girl. If my story can help just one person it would make me happy. With each grey cloud comes a silver lining and every day Gabbys silver lining shines through!