The Importance of a Name Can Never Be Underestimated

We finally got some good news today!

Our genetic counselor called with the results of the karyotype test (part of the amniocentesis).  A Karyotype test looks at the number of chromosomes in the cells.  In a typical person, there are 23 pairs of chromosomes. Extra or missing chromosomes cause many different problems.  For example, the most commonly known anomaly is having three of chromosome 21.  This is called Down’s Syndrome.  In our baby they were especially looking for Trisomy 18 or 13.  These disorders can cause similar problems to what our baby is showing.  Both are fatal diagnoses.  Our baby has two of each chromosome!  This test came back perfectly normal.  This is very good news.  While it does not give us any answers or change anything, or make the situation any less serious, it does rule out some very bad things.  Next, they will look for mutations within the individual genes.  Those results may take a while.  Also, our baby has two X chromosomes, that means we are having a girl!  

We are so excited with these results.  It feels amazing to have a little good news for the first time.  It is also indescribably wonderful to have some normal news to share.  “It’s a girl!” is so much better to share with people than what we having been having to tell people.  

This also means we get to share the name of our baby girl! Miriam Jordan.  We chose this name for very specific reasons.  Miriam is a Hebrew name with a debated meaning of either “rebellion” or “wished for child”.  We think both meanings are perfect.  Miriam is certainly very wished for.  She also is a rebel already!  She proved doctors wrong within her first eight weeks of life!  In the bible, Miriam is Moses’ sister and serves alongside her brothers to deliver the Israelites from Egypt.  Miriam was an extremely strong woman and a fighter, even from her childhood when she help save Moses.  We chose Jordan, after the Jordan River. The Jordan River is where the Israelites crossed into the promised land and where Jesus was baptized.  Our little girl has a strong name to inspire her fight to live!  We will call her Mira for short, meaning wonderful in Latin, or miracle in other cultures! 

Currently, the most important thing you can be praying for is that Mira will show much more brain development during our MRI at CHOP on Monday.  We hoping to leave CHOP on Monday with some answers about Mira’s prognosis.  Thank you for all your prayers, we will continue to tell Mira how much she is loved already!