Hailey-Turner Syndrome

Hailey-8yrs old

Diagnosis-Turner Syndrome

USA

Hailey-Turner Syndrome

Hailey-Turner Syndrome

 Hailey’s Story

It took us 2 ½ years to get pregnant with our sweet Hailey, we were all beyond excited when we found out I was expecting.  It was a pretty rough pregnancy as I threatened to miscarry my whole pregnancy.  When we went in for the 20-week ultrasound we were told that she had fetal hydronephrosis on her kidneys, which is a dilation of the kidney.  They told us we would need to see the Perinatologist as well until I delivered.  They were positive about her outcome so we saw the perinatologist from 20 weeks on.

Hailey-Turner Syndrome

Hailey-Turner Syndrome

Every two weeks it was the same, went in for full ultrasounds and stress tests all having the same outcome, kidney was still dilated but not worsening so the plan was to have urology check her after delivery and go from there.  It was on my last appointment with them that they found something new, she had some nuchal thickening on the back of her neck. The perinatologist looked at me and said “it could be chromosomal or it could be nothing” and walked out of the room.  I was in shock at how cold he was, I looked at the nurse and said what does this mean? She told me it could be anything from Down Syndrome to many other chromosomal abnormalities, she asked if I would like the perinatologist to come back in and further expound?  I told her not at all and walked out.  I called my OBGYN and said I cant do this anymore its time to induce he agreed and called the hospital right away and got it scheduled.

Hailey-Turner Syndrome

Hailey-Turner Syndrome

April 6, 2007 we went in and they hooked me up to pitocin her heart rate dropped, they turned it off and called the doctor. He told them to lower the dose and see what happens.  Same outcome, he told them he would be right there. When he got there, he told us we had two options, we could either have him break my water and see if that made a difference or we could do a c-section, we chose to do a c-section and it was a good thing we did, her cord was wrapped around her neck and it wasn’t long enough, she would not have made it any other way than c- section.  After she was born she wasn’t doing good breathing and her body was blue from the bottom half all the way down.  They took her right away for testing.

Hailey-Turner Syndrome

Hailey-Turner Syndrome

When they came into our room we could tell from the look on their faces it wasn’t good news.  They told us that something was going on with her heart and she wasn’t getting any blood flow to the bottom half of her body.  She also had some physical abnormalities and they were going to run some genetic testing but they were almost certain she had Turner Syndrome.  The cardiologist came in after some test’s and she told us she would feel more comfortable if she was at Primary Children’s Hospital and wanted to get her up there as soon as possible.

Hailey-Turner Syndrome

Hailey-Turner Syndrome

They were already prepping her to be life flighted and they would bring her to me to say goodbye as soon as she was ready.  A short time later my sweet baby was wheeled into me I had only held her for a half a second after she was born and I had to give her a kiss through the intabater.  This was by far the hardest thing I have ever had to do in my life. When they wheeled her out of my room I felt like my heart was being ripped out of my chest.  My husband met her at Primary Children’s and soon found out that she needed a coarchtation repair to allow the blood flow to get to her bottom half of her body.

Hailey-Turner Syndrome

Hailey-Turner Syndrome

Five days after she was born our sweet baby girl had open-heart surgery and spent three weeks up at Primary Children’s Hospital.   We are so glad that she fought so hard to be here with us we couldn’t imagine what our lives would be like without her.

Hailey-Turner Syndrome

Hailey-Turner Syndrome

Genetic Testing came back confirming the diagnosis as Turners Syndrome.  Turners Syndrome affects 1 in every 2,500 girls.  Girls with Turners are usually short in height, have heart problems and kidney problems and have some physical abnormalities.  Most girls are born with two X chromosomes but girls with Turners are born with only 1 X or they are missing part of one X.  Hailey was born with only 1 X, this will prevent her ovaries from developing properly in which will effect her ability to have children.

Hailey-Turner Syndrome

Hailey-Turner Syndrome

Hailey is now 7 years old and has been through more in her life than most of us will in our whole life.  She never lets it get her down she amazes us everyday. She is so happy and if you ask anybody that she knows, she is always smiling and has the most contagious laugh you can’t help but be happy when you are around her.   She has a spirit about her that we can’t explain but you can feel it anytime you are around her.  We truly feel like we are the lucky ones who get to have her in our family and we get to feel her sweet spirit each and every day.  She teaches us things daily and we have so much left to learn from her, she is our hero.

Hailey-Turner Syndrome

Hailey-Turner Syndrome

                     We have learned over the years that these angels are all sent here for a purpose, they are a gift to the world and how blessed we all are to have them among us.

Hailey-Turner Syndrome

Hailey-Turner Syndrome