A Light to Everyone She Meets

February 5, 2018

 

Kiersen was born in 2006 in distress.  After an emergency c-section, she was taken to the NICU where it was determined she had an infection and couldn't maintain her blood sugar levels.  She was in the NICU for a week, and during this time, several tests were run on her.
 

The day after she was released, the genetics doctor called to inform us that she has classic Turner syndrome, 45,X.  She scheduled an appointment for us to come in and learn more about TS, and also made appointments for her to have a renal ultrasound as well as an echo-cardiogram.  The renal ultrasound showed that her kidneys were fine and functioning normally.  Her echo was scheduled for two days after Christmas.  

 

After waiting in the doctor's office for more than 2 hours, the doctor walked in the room (this was our first time to actually meet) and shared that our baby was very sick and must be rushed to Duke Medical Center.  Kiersen had a coarctation of the descending aortic vessel.  We immediately took her to our local hospital to be admitted, and two hours later she was airlifted to Duke, which is four hours away from our home.

 

They were able to stabilize her, and she had thoracic heart surgery on December 29th.  The surgery went well.  The surgeon told us that everything was textbook in her case, and that if she did have TS, is was a "mild case."  We were able to take Kiersen home after only 5 days.  They orginally thought she would have to be hospitalized for at least 12 days. 

 

Kiersen was the most miserable baby for the first 6 months of her life.  She was overly sensitive to strangers; she would cry non-stop anytime she was not at home.  Then one day, it was like a switch was flipped.   She was the happiest baby!  Since that day, she smiles, she is full of life, and she is a light to everyone she meets!  She never meets a stranger and will talk to anyone.

 

Until she was around 6 years old, doctor's appointments were a nightmare for her.  She never left one without being poked and prodded.  Her grandmother, who is a nurse, couldn't wear scrubs around her Kiersen because it upset her so much.  

 

Kiersen has had two sets of tubes in her ears, has had her tonsils removed, is currently on growth hormone, and goes through all of the normal TS testing on a regular basis. She has also been diagnosed with a learning disability and has an IEP in place.  Her teachers brag on her constantly, and admire her perseverance and her "never give up" attitude at school.

 

Despite all that Kiersen has been through, she is a loving, outgoing little girl who wants to please everyone.  We take everything one day at a time with Kiersen.  We live in the moment and don't dwell on the what-ifs.  Kiersen has Turner syndrome, but it does not have her!

 

Additional Resources

 

Making Sense of IEP's and 504's by Kathy Montag

Video Presentation from the Turner Syndrome Society of the United States National Conference, July 22, 2017

 

About Turner Syndrome