Not your typical 4th of July…

I just arrived home after spending the extended weekend down in the Washington DC area celebrating with family.  By itself, that is nothing unique as millions of other Americans gathered together to celebrate the 4th of July.  However, the celebration I attended centered on the short, but impactful, life of my niece who passed away June 26. 

Shortly after her birth on June 8, my niece developed complications and was transferred to the ICU at Children’s Hospital where she was diagnosed as having the condition known as Trisomy 18.  Personally, I did not have a clue about what Trisomy was prior to hearing the term about two weeks ago.  While I cannot claim to be an expert on the condition, I will say that it is something that you would not wish on your worst enemy.

Here is a brief snippet from the Trisomy 18 foundation website.

Trisomy 18 is also called Edwards syndrome (or Edward’s syndrome) and occurs in about 1:3000 live births.  Unlike Trisomy 21 (Down syndrome), Trisomy 18 is usually fatal, with most of the babies dying before birth and those who do make it to birth typically living only a few days.  However, a small number of babies (<10%) live at least one year.

Trisomy 18 is the second most common trisomy and occurs when a baby has three of the eighteenth chromosome.  This results in 47 chromosomes instead of the normal 46 in the affected cells.  It is this extra genetic material that causes the problems associated with Trisomy 18.

Most trisomies (about 95%) are full trisomies.  That is, the extra chromosome occurs in every cell in the baby’s body.  This type of trisomy is not hereditary, and is not due to anything the parents did or did not do, and it is by far the most common type.  In most literature, Trisomy 18 means full Trisomy 18.

After the eight-hour drive home, I had a chance to sit and reflect on my life vs. that of my niece.   I have lived nearly 43 years and have contributed to the lives of many, however the impact I have made seems to pale in comparison to of my young niece, who in a mere 18 days touched the lives of all those who met her.  

For those interested in contributing to research to help prevent this condition, here are a few sites that you might find useful.  

Children’s National Medical Center

Capital Hospice


One Response

  1. So very sorry to hear about your niece. Very sad for you and your family.

    I hope you are doing well. Love your blog!

    Michelle H

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