Intro: I will go here soon... (obvious trigger warnings)
Oct 24, 2016 12:41:30 GMT -5
Post by aprilz81 on Oct 24, 2016 12:41:30 GMT -5
Hello everyone, I don't quite belong here yet, but I will in a few months. I've been lurking for awhile and I finally feel ready to intro.
I'm April, soon to be mother of A.va Gra.ce who is expected to pass shortly after birth. At 18 weeks during a regular Level II ultrasound we found a lot of abnormalities, Congenital Diaphragmatic Hernia, hand deformities, overall small size and a two vessel umbilical cord. Initially they suspected Trisomy 18 but the results of the amnio and following microarray showed a genetically normal female. The current best case is that A.va has Cornelia de Lange Syndrome but we are waiting on another round of DNA testing in hopes of confirming the diagnosis.
Two weeks ago we had a fetal MRI done and the results were even worse than we thought. They could find no discernable lung tissue due to the Congenital Diaphragmatic Hernia and they suspect A.va has less than half of her diaphragm. Her stomach, and parts of her spleen, intestines and liver are all in the chest cavity which has kept the lungs from growing normally and has pushed her heart over to the right side of her chest. They could see her diaphragm in the middle, but could not find anything on the right side and they suspect a large hole on the left side.
All of this means that she will probably not be a candidate for repair surgery and if she is there is a very, very low chance of her surviving. We have made the painful decision that due to the poor prognosis of surgery combined with the complications from the likely Cornelia de Lange Syndrome that we will only provide comfort care when she is born. We want her short time on earth to be in our arms and surrounded by family instead of being hooked to machines and transported to a different hospital.
She is currently in the 19th percentile for growth (but all of her individual measurements are at/below 10%) and if her overall growth drops down to the 10th percentile they will induce me. Without the induction our chances of stillbirth dramatically increase and we want to be able to spend as much time as we can with her while she is still on this earth. The doctors think that we will only have minutes with her after the umbilical cord is cut, which is just so hard to imagine.
This is our second pregnancy and our first child. We struggled with infertility so this just seems like pouring salt into a wound to us. We have mostly come to terms with the outcome but like everyone we have good days and bad.
We (specifically I) want to pre-plan as much as possible so the decisions are made before we go to the hospital. As grim as the decisions are I know I will be comforted by the fact that I can wallow in my grief when the time comes and not have to make decisions on arrangements.
Our official due date is January 12th but we will be delivering no later than December 31st and our doctors think it will be sooner as her growth slows down.
I'm April, soon to be mother of A.va Gra.ce who is expected to pass shortly after birth. At 18 weeks during a regular Level II ultrasound we found a lot of abnormalities, Congenital Diaphragmatic Hernia, hand deformities, overall small size and a two vessel umbilical cord. Initially they suspected Trisomy 18 but the results of the amnio and following microarray showed a genetically normal female. The current best case is that A.va has Cornelia de Lange Syndrome but we are waiting on another round of DNA testing in hopes of confirming the diagnosis.
Two weeks ago we had a fetal MRI done and the results were even worse than we thought. They could find no discernable lung tissue due to the Congenital Diaphragmatic Hernia and they suspect A.va has less than half of her diaphragm. Her stomach, and parts of her spleen, intestines and liver are all in the chest cavity which has kept the lungs from growing normally and has pushed her heart over to the right side of her chest. They could see her diaphragm in the middle, but could not find anything on the right side and they suspect a large hole on the left side.
All of this means that she will probably not be a candidate for repair surgery and if she is there is a very, very low chance of her surviving. We have made the painful decision that due to the poor prognosis of surgery combined with the complications from the likely Cornelia de Lange Syndrome that we will only provide comfort care when she is born. We want her short time on earth to be in our arms and surrounded by family instead of being hooked to machines and transported to a different hospital.
She is currently in the 19th percentile for growth (but all of her individual measurements are at/below 10%) and if her overall growth drops down to the 10th percentile they will induce me. Without the induction our chances of stillbirth dramatically increase and we want to be able to spend as much time as we can with her while she is still on this earth. The doctors think that we will only have minutes with her after the umbilical cord is cut, which is just so hard to imagine.
This is our second pregnancy and our first child. We struggled with infertility so this just seems like pouring salt into a wound to us. We have mostly come to terms with the outcome but like everyone we have good days and bad.
We (specifically I) want to pre-plan as much as possible so the decisions are made before we go to the hospital. As grim as the decisions are I know I will be comforted by the fact that I can wallow in my grief when the time comes and not have to make decisions on arrangements.
Our official due date is January 12th but we will be delivering no later than December 31st and our doctors think it will be sooner as her growth slows down.
