A Mother’s Testimony Before State Congress

Posted on Posted in Alobar Holoprosencephaly, D&E

By Heather P. Dear esteemed members of the NC House Health Committee, my name is Heather P. and I am writing as testimony in opposition to HB 465 being considered tomorrow in your chambers. I kindly ask you to read my story with an open mind before deciding how you will vote on this important issue. HB 465 seeks to both limit and truncate the rights of all North Carolina women while additionally placing one of this state’s most esteemed medical learning institutions at risk of monumental damage to both its reputation and ability to retain its full accreditation. The restrictions being proposed against UNC […]

Beyond Imagination

Posted on Posted in Alobar Holoprosencephaly, Induction/L&D, Stories

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 […]

Our Hailey Judith

Posted on Posted in Alobar Holoprosencephaly, Stories, Trisomy 13 (Patau syndrome)

┬áBy Jess 311 I couldn’t believe it when the home pregnancy test was positive. I thought surely it would not happen so soon. It had only been two months since we started trying. I can’t describe how excited I was, but I thought for sure it couldn’t be true, that I must have let it sit for too long. Well, three more tests with lines and one digital test later and we new for sure. We were having our first child. We couldn’t wait to tell people. I couldn’t wait to get to the doctor to hear the heartbeat. I’ll never forget the first time […]

What is Holoprosencephaly?

Posted on Posted in Alobar Holoprosencephaly, Diagnosis Information

The forebrain normally develops around fifth or sixth week of pregnancy. In cases of Holoprosencephaly, the forebrain fails to divide into bilateral hemispheres. This results in defects of the brain, as well as facial malformations. Holoprosencephaly falls into three classes: 1. Alobar Holoproencephaly is when the brain does not divided at all. This is usually associated with severe facial deformities. 2. Semilobar Holoprosencephaly is when the brain’s hemispheres have somewhat divided, causes an intermediate form of the disorder. 3. Lobar Holoprosencephaly is when there is more separation between brain hemispheres. This is the least severe form, and the fetal brain may be nearly normal. According […]