Baby Jacob's Diagnosis

I decided to start this blog as a way to keep friends and family updated on baby Jacob’s progress.  If you are reading this blog and you have a baby with the same diagnosis, please feel free to follow along on our journey and don’t hesitate to make contact with me.  It has been 7 weeks since Jacob’s diagnosis, and there have been many hard turns and learning curves in that time.

Our little family of 3 had been through a lot in 2012, and we were glad to see the calendar turn to 2013.  This year will hold many challenges for our family, but we have hope and faith that God will see our little boy through this year and many more to come.  It all began at my 19 week ultrasound, when the technician was having difficulty getting a clear picture of the baby’s heart.  We were asked to come back a week later for another ultrasound, and left with no indication that something was wrong.  At my 20 week follow up ultrasound it was a much different story.  I remember lying on the examination table while 2 technicians, a doctor and a resident all peered at the screen, trying to make sense of what they were seeing.  No one was communicating with me or Jon as we waited, but it was clear from the demeanor of those looking at the screen that something was wrong.  By this time I was crying, the tears were just pouring out, and still no one was communicating with us.  Finally, that examination ended and the doctor gave us a minimal amount of information – our baby was a BOY! and the left side of the baby’s heart was much smaller than the right side.  The term the doctor used was Hypoplastic Left Heart Syndrome, and we were told to come back two days later to see the Pediatric Cardiologist, Janeway Genetics and the Maternal Fetal Assessment Unit. 

The visit two days later is forever etched in my mind as one of the most painful days of my entire life.  We received an overload of information on HLHS from each specialist, and I had an amniocentesis to rule out chromosome abnormalities and other defects which would make Jacob’s diagnosis instantly fatal.  Termination of the pregnancy was suggested as an option by each specialist – and each time we turned around and told them that it was NOT an option for this baby.  We were told that 60% of couples who receive this diagnosis terminated the pregnancy and that if we were to terminate we only had 5 days left where that was an option.  We left that appointment knowing three main things: 80% of babies born with HLHS survive the first three surgeries, the list of possible complications for our baby was horrifically long, and that we would have to head to Sick Kids in Toronto to have the baby.  Jon and I were devastated as we walked out of the hospital.  All we wanted to do was go home and wrap our arms around our daughter Georgia and never ever let her go. 

We spent the following week asking impossible questions: Why is this happening to us? How are we going to deal with this? How are we going to handle the financial implications of this? And my own personal battle – What did I do to cause this to happen?