On November 30, 2010, at 18.5 weeks gestation, we found out that we were blessed with our first daughter, after having been blessed by two boys. But,unfortunately, this wonderful news was laced with sorrow. We also found out that she has a rare condition called Amniotic Band Syndrome. What we saw on the ultrasound was, at first, a deformed skull, the "Lemon Sign", as it is called in the medical field. The lemon sign is often an indicator of spina bifida or downs syndrome, according to the ultrasound tech that was doing our ultrasound. But upon further investigation, the spinal cord looked perfect, and in fact the rest of the body looked perfect, and the heart rate was strong and normal. Another tech came into our room, and looked closer and further. And this is when we saw the band attached to the head. We were so sad, heartbroken, devastated, shocked, and bewildered, and we felt sick about the future of our first and precious little girl.
On Dec. 6, 2010, at around 19.5 weeks gestation, we had a consultation with our Ob/Gyn. He gave us the full ultrasound report. The diagnosis: the amniotic band is attached to the front part of Luisa's head. It has been there for awhile causing the skull to not be able to develop correctly, and in the area where the amniotic band is found, the skull is missing leaving the brain exposed. This condition is called Acrania. It is fatal. But there was a chance instead of being Acrania, the condition might be Acalvaria, the main difference, at least from what I understand, being that in Acalvaria there is skin covering the exposed part of the brain, giving our little girl a chance at surviving. If she had survived I would have had to deliver her at a specialty hospital via c-section ( regular vaginal delivery would have been too much for her precious head).
As it turns out our journey with this diagnosis was so, so short. On Dec. 29, 2010 we went in for another ultra-sound to find that Luisa's heart had stopped beating. She had passed away quietly in my womb. On Jan. 1, 2011 ( 1/1/11) I delivered my sweet daughters precious, still body via induced vaginal delivery. We were so blessed to have a great doctor and excellent nurses who were so kind and compassionate, and did everything that they could to make the delivery special. We were able to hold her and spend a couple of hours with her which was something that I feel so lucky to do. We then took pictures, which are now some of our most treasured items, along with her hand and footprints that the nurses put in plaster.
Although she died so prematurely, and this has been a challenging time, it has also been a time of great learning and growth. And although I felt sadness and sorrow, I also felt so much love. I felt love of family and close friends, love from my Heavenly Father, and for my Heavenly Father. I also felt so much love for my daughter. Her life was not one of tragedy, it was one of sweetness and great spirituality.