Turner Syndrome--anyone have any experience to share?

[Julie in CA]

A nephew and his wife are expecting their first baby and have just had an ultrasound that showed Turner Syndrome. She is at 22 weeks now, I think.

 

The situation sounds extremely grim. Is there any hope of a happy outcome? :crying: I'm Googling, but what I really want is anecdotes.

[Moxie]

I don't know much. I did lose a baby girl that had Turner Syndrome. My DD has a class with a little girl with Turner Syndrome. She does have medical issues and sees mutiple doctors on a regular basis. She is fully functioning (it is a dance class) but I know she has been through lots to get where she is. :grouphug:

[justasque]

We have a friend with TS. She's a great teen; we like her a lot. She gets along really well with my kids.

She's had a few health issues along the way, but nothing serious. She doesn't have any serious academic or social issues either.

Knowing in advance will help, mom & dad can do their research before baby is even born.

Edited November 17, 2011 by askPauline

[mommyto4]

When I was doing my practicum for my Special Ed degree, I had a lovely student with Turner Syndrome. She was a beautiful person! She was in Grade 7 and had just learned how to read. She worked so hard in all she did.

[Julie in CA]

They have been told that it is unlikely in the extreme that the baby will survive beyond birth. Not much that I've been reading addresses anything beyond the fact that 99% of babies with Turner Syndrome will be miscarried within the first trimester. I'm not seeing much in terms of statistics for anything beyond that.

[Mandy in TN]

About TS

 

The actress Linda Hunt has Turner Syndrome.

 

Most females are born XX. One in 2500 have Turner Syndrome. It means that one of her X chromosomes isn't complete or is missing entirely.

 

Just because a child is born with Turner doesn't mean that she will automatically have diminished mental capacity. It does mean that she will be short even with growth hormones. It does mean that she will need estrogen to have the uhmm curves and the mentrual cycle that XX women have. So, the parents will need to address what is going on before her little friends hit puberty.

 

The child I know with TS is a tiny cutie. She has normal intelligence. Although there are some medical issues, without being told that she has a chromosomal abnormality, a person walking down the street (and other children) have no idea that she is any different from any other little girl.

 

HTH-

Mandy

Edited November 17, 2011 by Mandy in TN

[justasque]

...She has normal intelligence. Although there are some medical issues, without being told that she has a chromosomal abnormality, a person walking down the street (and other children) have no idea that she is any different from any other little girl.

 

That describes our friend as well.

This page may give some hope to your nephew. Lots of personal stories here.

[AFwife Claire]

I graduated from high school with a girl that had Turners. We are facebook friends, and she is a lovely person! She is married to a deaf man, and they adopted 2 children. Definitely a happy outcome for her!

[Tap]

DD's best friend has mosaicism Turners. They just now told the girl at age 13, as they haven't ever had a reason to before. She is 5'5" I would guess and is still growing (both parents are quite tall so that may be shorter that she would be otherwise). She hasn't had any medical issues at all. She is developing at an age appropriate pace without medical intervention. She was homeschooled but is at a typical grade level for her age and is quite bright. Her mother says she learned to read later than most kids and has attended Kumon for math for years, but is currently on target for everything.

 

She is mosaic (only some of her DNA is affected) so that accounts for her being in the normal range on everything but also shows that sometimes there is a bright side.

[Aggie]

We know a beautiful young woman with TS. She was diagnosed at 13 and only because she was so much shorter than her siblings. She was told she'll never have kids. :(

 

She has a degree and a great job.

 

Her mother told me that when she went to a TS camp in the summers, she was the only one without any physical symptoms of TS. Some of the other kids had a rough time in school, but my friend said they were all great kids.

[Tap]

A nephew and his wife are expecting their first baby and have just had an ultrasound that showed Turner Syndrome. She is at 22 weeks now, I think.

 

The situation sounds extremely grim. Is there any hope of a happy outcome? :crying: I'm Googling, but what I really want is anecdotes.

 

Are they planning to do an ultrasound or other DNA testing? I wouldn't want to weigh an ultrasound result too heavily.

 

(We lost a baby at 22weeks in utero. She was diagnosed first via ultrasound, then amnio. In our case amnio confirmed the ultrasound's reported 'suspicions' but I know A LOT of other women who did not get the same result between ultrasound and DNA results.)

Edited November 18, 2011 by Tap, tap, tap

[mommylaw]

My 10 year old's best friend has TS. She is absolutely delightful, has tons of friends, excels at school and is on the swim team. She does have heart issues and has a pacemaker. Most TS girls are very sweet as most don't go through puberty and have those teenage rages.

 

Her mother was heavily encouraged to abort and talks about the pressures she felt.

[ereks mom]

My mom has a dear friend who has Turner Syndrome. She is in her late 50s now. She is quite diminutive, but other than that, her appearance is normal. She is slightly slow cognitively, but is able to read pretty well. She is beginning to have some severe hearing and vision loss, which my mom (a nurse) says is common among Turner's patients. Sbe is married, but of course, was not able to have children. She is one of the sweetest, most loving, compassionate people I know.

Edited November 17, 2011 by ereks mom

[Captivated]

My dd8's BFF :) was recently diagnosed with Turners. They had no reason to suspect anything because she is perfectly healthy except she isn't growing anymore. She is smart and wonderful.