HomeNewsArticle Display

VIEWPOINT: Mother seeks to spread knowledge of daughter's syndrome

BUCKLEY AIR FORCE BASE, Colo. -- Editor's Note: This story was written by a Buckley Air Force Base military spouse in an effort to raise awareness for Turner Syndrome.

"Mrs. Bellamy, Kaylei has Turner Syndrome."

This call came after a long week of waiting for results of a test I was sure was unnecessary. I had convinced myself for years that Kaylei's short stature was because her grandmother is only 5 feet 2 inches tall. Kaylei's five-year, well-baby appointment would prove that wasn't the reason at all.

The visit started with a pause from the pediatrician as she looked at Kaylei's dad, Kaylei's brother and then me. We are all above average height. Kaylei was measured at just over 36 inches tall. This was the average height for a 3 year old and meant that Kaylei was shorter than 95 percent of girls her age. How could I not notice that she wasn't getting any taller? I'm her mother; all I could see was a beautiful little girl.

The pediatrician gave Kaylei a thorough check up that included a few things that her other pediatricians had not done during past visits. She checked Kaylei's hairline on the back of her neck, looked closely at her elbows and checked her toenails. She also questioned and noted the numerous moles Kaylei had. At the end of the visit, she assured my husband and me that Kaylei is a healthy little girl. However, she wanted to test Kaylei for a chromosomal disorder called Turner Syndrome.

My heart sank. Even though I had never heard of Turner Syndrome, my heart sank. Briefly, I allowed myself to feel sorry for her in thinking that she may not be perfect. I would later discover, and continue to discover, that she is more perfect than I could have ever imagined.

What would Turner Syndrome mean for her? Will she get sick? Does this affect her life expectancy? What? After we left the doctor's office, we went home and did what any loving parent would do - researched Turner Syndrome!

Turner syndrome is a non-inherited chromosomal disorder that describes girls and women with common features and physical traits caused by complete or partial absence of the second sex chromosome. After reading about the worst-case scenarios, I was actually able to find useful information.

If she truly had Turner Syndrome, so much makes sense now: her height, her inability to focus, her odd hairline, her hearing and vision, her multiple moles, her non-existent toenails at birth that are now oddly shaped. Several quirky little things that characterize Kaylei are some of the exact characteristics of Turner Syndrome. With this new-found knowledge and ability to accurately diagnose my daughter, I, like so many other parents, am officially an internet M.D. After spending countless hours - days and nights - researching TS, it was time to stop and just wait for the call.

The phone rang and without a lot of small talk the pediatrician said, "Mrs. Bellamy, Kaylei has Turner Syndrome."

I couldn't really say anything. I was already crying. I had researched enough to know that she could have health issues that we aren't even aware of. Here we are seven years later, and I still get emotional when I think about how lucky we are to have Kaylei.

This syndrome only affects approximately one in 2,500. Sadly, approximately 99 percent of baby girls with this syndrome die before birth. The common conditions for girls with TS include delayed puberty; infertility due to non-functioning ovaries; hearing loss; social difficulties; heart defects; kidney, thyroid and liver concerns; chronic ear infections; and puffy hands and feet. There are some common physical traits such as short stature (with the help of a growth hormone, the average height for a woman with TS is 4 feet 8 inches tall), small jaw, triangular face, many moles, high-arched palate and a webbed neck.

Kaylei has some of the conditions and traits of TS, and we are blessed by those conditions and traits. She has been taking a growth hormone shot for 6.5 years and has recently passed the 4-feet 8-inches mark. She'll tell you it's because she has tall genes.

As far as school goes, Kaylei, like many other girls with TS, struggles with math. Because Kaylei has a few other learning difficulties and special circumstances, her teachers allow her a little extra time in completing assignments and will give her additional guidance as needed. We are so fortunate to have an amazing group of teachers and staff at her current school, Peakview Elementary, who have partnered with me and my husband in providing Kaylei with the necessary tools that she will need in moving on to middle school.

Overall, Kaylei is fine and will always be fine. She is an amazing girl with a healthy and happy outlook on life and is looking forward to the day I stop being so overprotective. I hate to tell her, that day will never come.

To learn more about Turner Syndrome, please visit www.turnersyndrome.org.  
USAF Comments Policy
If you wish to comment, use the text box below. AF reserves the right to modify this policy at any time.

This is a moderated forum. That means all comments will be reviewed before posting. In addition, we expect that participants will treat each other, as well as our agency and our employees, with respect. We will not post comments that contain abusive or vulgar language, spam, hate speech, personal attacks, violate EEO policy, are offensive to other or similar content. We will not post comments that are spam, are clearly "off topic", promote services or products, infringe copyright protected material, or contain any links that don't contribute to the discussion. Comments that make unsupported accusations will also not be posted. The AF and the AF alone will make a determination as to which comments will be posted. Any references to commercial entities, products, services, or other non-governmental organizations or individuals that remain on the site are provided solely for the information of individuals using this page. These references are not intended to reflect the opinion of the AF, DoD, the United States, or its officers or employees concerning the significance, priority, or importance to be given the referenced entity, product, service, or organization. Such references are not an official or personal endorsement of any product, person, or service, and may not be quoted or reproduced for the purpose of stating or implying AF endorsement or approval of any product, person, or service.

Any comments that report criminal activity including: suicidal behaviour or sexual assault will be reported to appropriate authorities including OSI. This forum is not:

  • This forum is not to be used to report criminal activity. If you have information for law enforcement, please contact OSI or your local police agency.
  • Do not submit unsolicited proposals, or other business ideas or inquiries to this forum. This site is not to be used for contracting or commercial business.
  • This forum may not be used for the submission of any claim, demand, informal or formal complaint, or any other form of legal and/or administrative notice or process, or for the exhaustion of any legal and/or administrative remedy.

AF does not guarantee or warrant that any information posted by individuals on this forum is correct, and disclaims any liability for any loss or damage resulting from reliance on any such information. AF may not be able to verify, does not warrant or guarantee, and assumes no liability for anything posted on this website by any other person. AF does not endorse, support or otherwise promote any private or commercial entity or the information, products or services contained on those websites that may be reached through links on our website.

Members of the media are asked to send questions to the public affairs through their normal channels and to refrain from submitting questions here as comments. Reporter questions will not be posted. We recognize that the Web is a 24/7 medium, and your comments are welcome at any time. However, given the need to manage federal resources, moderating and posting of comments will occur during regular business hours Monday through Friday. Comments submitted after hours or on weekends will be read and posted as early as possible; in most cases, this means the next business day.

For the benefit of robust discussion, we ask that comments remain "on-topic." This means that comments will be posted only as it relates to the topic that is being discussed within the blog post. The views expressed on the site by non-federal commentators do not necessarily reflect the official views of the AF or the Federal Government.

To protect your own privacy and the privacy of others, please do not include personally identifiable information, such as name, Social Security number, DoD ID number, OSI Case number, phone numbers or email addresses in the body of your comment. If you do voluntarily include personally identifiable information in your comment, such as your name, that comment may or may not be posted on the page. If your comment is posted, your name will not be redacted or removed. In no circumstances will comments be posted that contain Social Security numbers, DoD ID numbers, OSI case numbers, addresses, email address or phone numbers. The default for the posting of comments is "anonymous", but if you opt not to, any information, including your login name, may be displayed on our site.

Thank you for taking the time to read this comment policy. We encourage your participation in our discussion and look forward to an active exchange of ideas.