We know that some of you may have questions about some thigns....Jacob's birth, death, treatments. We are pretty open with Jacob's story to help others understand. After jacob was born there was a night I searched other blogs just to fins out what others went through and theri story so I could maybe have some glimps of what to expect. We want to be here to support others. If you have questions, please feel free to ask...we are not easily offended so do not be shy......if there is something we do not want to share, we will respond appropriately. You can email your questions to firstname.lastname@example.org.
Q: How is it that you only found out a week after Jacob was born that he had T18?
A: We knew Jacob had a heart condition (complex congenital heart disease) back in October but we did not want to take that chance of miscarrying by doing an amniocentesis (1% of babies miscarry during/after this procedure). The doctors were not going to change their treatment so we decided not to put him in harms way and just wait for the genetic testing after he was born. The result of the amnio would not have changed our minds on how to treat him so we just made the safest decision for Jacob. Although we were curious, our curiosity was not enough to take that 1% chance to lose him. We kept it all in the Lord's hands and took nothing into our own.
All of Jacob's other features were mild and although there were a few other issues detected on ultrasound, they were nothing to lead us to this diagnosis.
The morning after he was born, the geneticist came in and did an exam based on his features and diagnosed him then. The genetic blood test was already being done but it took 3 days to get the results back. We found out the definite diagnosis on Thursday, January 17th.
4 days ago