Lily's Story

In May of 2011, at 19 weeks pregnant, an ultrasound revealed that the baby I was carrying had complications.  She had a very large sac of fluid on the back of her head/neck called a cystic hygroma.  In addition she had fluid around her heart and filling her left lung.  We were told it was likely that she had a chromosomal or genetic abnormality and that her chances of making it to her birth alive were between 2 and 7 percent.

What followed was a story testing both our faith and sanity - the most intense emotional journey I have every been on.  It culminated in a full term baby girl named Lily Grace being born via a scheduled C-section on September 16th, 2011.  She spent 4 days in the hospital and then, much to our shock, came home with us! 

Lily was diagnosed after birth with something called Turner Syndrome.  Turner Syndrome is a A non-inherited chromosomal condition that effects about 1 in 2500 live births.  It is where a female is missing all or part of the second "X" chromosome.  Lily is missing all of the second chromosome (called full XO Turner Syndrome).  Turner Syndrome girls are of average intelligence, but have a variable set of other condition such as:

-- Delayed puberty
-- Heart defects
-- Puffy hands and feet
-- Infertility due to non-functioning ovaries
-- Kidney, Thyroid and Liver Concerns
-- Hearing loss
-- Frequent ear infections 
-- Learning Difficulties especially with Math
-- Social Difficulties
-- Osteoporosis

Plus common physical traits such as:
-- Short Stature (under 5 feet)
-- Many moles
-- Receding lower jaw
-- Low-set ears
-- Triangular face
-- Webbed neck

With the help of medical specialists and a good social support system, a woman with Turner Syndrome can live a happy, healthy life!

There are approximately 80,000 women and girls with Turner Syndrome in the United States with about 800 new cases each year.

If you are interested in reading all of Lily's story...start to birth I have included the links to each post in order.  If you have any questions about cystic hygroma or Turner Syndrome I will try to help however I can.  Please email me at or contact the Turner Syndrome Society of the US

This is Lily's story... from the very beginning, until her birth story
I'm Pregnant
Week 12
Week 13
Week 14
Week 15
Week 16
Week 17
Week 18
Ultrasound where we find out about the complications
Girly Clothes
Week 19
That is not my Struggle
Week 20
Week 21
First Followup Ultrasound
Week 22
Week 23
Another Ultrasound - Things are not worse!
Week 24
Week 25
That's what Friends are For
Yet Another Ultrasound
Week 26
Misconceptions - Part 1
Week 27
The Hygroma Shrinks - The possible encephalocele appears
These are NOT my plans
Week 28
Now my Blood Pressure goes up
Week 29
My Medical Journal Debut - more about encephaloceles
Misconceptions - Part 2
Week 30
I am Tired
Week 31
Only a month left!
Week 32
Week 33
The Good, The Bad, and The Ugly
Week 34
Sept 1st
Week 35 - Amazing Picture of my Lily
Its a Go
Announcing Lily Grace
Missing, One X  Found, One Miracle
My Pearl
Dear Lily, Your Birth Story

Making this page was an emotional journey for me.  But I hope in some way if you read it you will be touched, you will find comfort and hope, and you will know that God - the God of Wonders - is an amazing, loving, and all knowing God.

My sweet pink angel - 5 weeks old Lily Grace