Excuse me for being nosy

[Duffy6684]

Hi, Please excuse me if any of you think I am being nosy or rude here. I was just wondering if anyone has had a child with Turner syndrome?

The reason I am asking is my sister has it. She was born with it but it wasn't detected before her birth. I'm just wondering how your day to day life is with a child that has Turners.

My sister is 21 this year 5ft2 1/4 inch, thanks to growth hormone. She has a bicuspid aortic valve(missing valve in heart), complete hearing loss in her left ear due to having her mastoid bone removed as it was seriously infected. She has slight learning difficulty but with more time and studying put in she passed with good enough grades to be a purchase ledger and is planning on working up the ranks.

My sister has been told that due to Turners she will never be able to conceive a child naturally. She has the womb there but no eggs. She has no menstrual cycle and has been receiving hormone replacement therapy to bring on "fake periods".

She has a degree of brital bones disease, they don't break at the slightest touch but a knock onto a wall will break her arm (happened in primary school) Emma has swelling of one foot in particular that despite treatment has never corrected. She finds it hard to get nice shoes to wear beacause of this.

I'm sure there is more I have missed and if I was to show this to my mother she would know what to add. The point I am hoping to make is my sister lives a fairly normal life. She struggles with weight but Emma doesn't let it get to her. She loves her job and is very social. Every weekend Emma is in town at clubs and pubs enjoying life. My sister and I have always known about her condition. My mother and Father made the decision that they wouldn't wait till we were older but would answer questions honestly whenever we asked. My mum made a point of keeping a large folder full of papers, documents and articles to do with Turners available to us.

At the age of 11 Emma knew that her having a child was going to be a long and difficult process, a discussion with me and her in my mothers present even led to the decision that I would give her eggs if i could and I intend to honor that.

I'm just wondering if there is anyone on BnB that has a daughter with this condition. Is anyone living with someone who has Turners or pregnant with a child that has the risk of Turners.

I'm sorry I have babbled on but never really had a place where I could discuss the life I had with my sister and the life she has. If there is anyone who wishes to share I look forward to hearing your opinion. xox

 

[mordino]

I read your post with great interest.

Well, I lost my precious daughter last week at 17 weeks. She was diagnosed with Turner Syndrome at 13 weeks. My husband and I decided to give her a chance even though we knew that the risk of miscarriage with TS babies is very high. We still hoped that our daughter would make it and we would get to hold her and raise her. We really wanted the baby. We knew that children with TS would be able to live a normal and happy life with help and support. We were so looking forward to meeting her but sadly, my baby's heart stopped and I delivered our beautiful baby last Sunday. We are missing her so much....

I have read as much as I could about Turner Syndrome, so I have a good understanding of TS and I will continue to stay in touch with Turner Syndrome Society as I am donating in Lauryn's memory.

Your family is SO blessed to have your sister Emma. We are desperately sad that our Lauryn couldn't make it.

EDIT: Oh yeah..about Emma's weight, did they have her thyriod levels checked? Apparently, TS girls are more likely to have hypothyroidism than others. I am hypothyroid myself, so I know what it is like to struggle with weight.

 

[Duffy6684]

I'm so sorry that you lost your daughter. I have never lost a child so can't say I understand what your going through but my thoughts and prayers are with your family.

We count our blessings that Emma is with us everyday and is leading a happy and normal life. I can't say I have heard my mother mention her been tested for hypothyroidism but will certainly bring it up with her when i see her next.

Thank you for replying to my post. God bless you and your family. Sending prayers and love to you and your darling angel

 

[Ravenmist]

i haven't had a daughter with TS but i have a great friend with the condition.
her day to day life is pretty normal and she is studying law whilst working and although she has some heart problems everything else seems fine.
earlier this year i did an IVF cycle for her and she is almost 6 months pregnant now, being so short she is all bump out front and will also have to have a c section due to the stress a natural labour would put on her heart