Turner Syndrome (and an introduction)

LyndseyTS

Hi Everyone!

This is my first time on this message board. I hope that I'm okay to create a new discussion, if not, feel free to delete. I looked back about 5 pages and couldn't find any topics related to this.

My husband and I recently found out that our little one has Turner's Syndrome (after going through the whole process). This is our (and my) first pregnancy and needless to say, it's not what we expected (I'm sure that many of you can relate). Is there anyone else that has experienced it? The biggest thing weighing on us right now are her odds for survival. She's a fighter (I'm 20 weeks today), but 95-99% of little ones with Turner Syndrome miscarry or are stillborn. We've had a number of checkups with specialists and they can't give us anything better specific. The fluid build-up around her is getting worse (not better, as we had hoped) and at our last ultrasound, she was measuring small (regular growth up until that point).

Just curious if there are others out there with similar experiences and thought that I'd introduce myself. It seems that I'll be part of this group now, if you'll have me.

Ylvelill

*hugs* welcome

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ajsweeton

I have a friend with turners syndrome. She's very small which is characteristic of it and she is unable to have children, but other than some hearing problems she is perfectly healthy. Hoping for a good outcome for you and you little girl.

LyndseyTS

@Ylvelill Thank you! I'm glad that I found the high risk board. We share the same BMB too, right? It's good to be among others who understand. @toriisalemon and @ajsweeton thank you for sharing your experiences. It's reassuring to know that there is hope. I think our biggest challenge now is just waiting it out. Whenever I don't feel her move for a couple of days, I freak out a little bit. I know it's silly because I'm only 20 weeks and I know that feeling movement at that time is inconsistent at best, but the intellectual knowing doesn't always help the heart's fear.

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Ylvelill

@LyndseyTS - yep, recognized you from there so didn't think I needed to repeat my story glad you found this board too, it is filled with lovely ladies!

flerlgirl

ajsweeton said:

I have a friend with turners syndrome. She's very small which is characteristic of it and she is unable to have children, but other than some hearing problems she is perfectly healthy. Hoping for a good outcome for you and you little girl.

My friend with Turner's sounds very similar. OP, I have no personal experience but just wanted to wish you luck! 

LyndseyTS

@ChickenOnSunday Thank you!

@AuburnGirlSC Thanks for being willing to share. I’m glad that there is hope for some little ones with Turner to make it. Out of curiousity, did you opt for genetic testing and they didn’t catch it or did you opt to skip? At this point, I’m weighing the value against the stress and am not sure where I fall anymore. Also, @ChickenonSunday mentioned that might be able to connect me with a FB group…is it just for those who are already born and struggling with Turner’s or are those of us who are on the journey able to join? Sorry for all of the questions! I feel a little bit relieved to be able to chat with someone who has been through it before to some extent.

@toriisalemon This makes me feel a little bit better about doing the genetic testing. That way, if she makes it, we’ll be prepared and able to do whatever we can to help. And your sister doesn’t resent getting the HGH? I think that would be one of my bigger fears if we make it to life!

@flerlgirl Thank you! In all honesty, I’m freaking out a little bit. I haven’t felt any movement since Friday morning (so 3 full days) which is a little bit out of the ordinary. Trying to remind myself that it’s early enough for that to happen and for everything to be okay. Tricky to do after a not-so-great U/S last time around. I guess we’ll find out for sure on Friday…Your signature gives me hope either way (I hope that’s okay and not offensive).

If you think of it, T&Ps are appreciated. I will update on Friday and let you know how it goes.

flerlgirl

@lyndseyts - not offensive at all! I'm glad it gives you hope! The technology and medical resources available for babies today is so amazing and I know a ton of babies who "shouldn't" have made it who are now driving their parents crazy by trying to eat all the electrical cords in the house  

edited because I need more caffeine to make sense

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LyndseyTS

@toriisalemon We've already done all of the genetic testing, I'm just seriously considering whether or not to the next time around. It has been really helpful in knowing what to expect, but is definitely more stressful than not knowing. Basically, for us, the genetic testing looked like this: typical blood testing (twice, with whatever amount of time between - I can't remember). That ended up being a moot point because there were 4-5 "soft markers" on our first ultrasound (around 12 weeks, I think?) which had them refer us before I even got the second blood draw done. I also opted (totally optional) to have an amniocentesis because we knew based on the previous information that something was up and wanted to prepare ourselves for whatever particular genetic disorder our little one might have. CVS was also an option, but carries a higher rate of miscarriage, so we opted to wait knowing that we would keep the baby no matter what, Lord willing. The amnio confirmed Turner Syndrome using karyotyping. And it's just been back and forth and here and there since.

@AuburnGirlSC Thank you. I really do appreciate the information you shared. I don't think I'm going to join the Facebook group (feel free to read below for why - I really really am appreciative, I just don't think it's where I "belong" now, though I'm still trying to figure that out). I'm so glad that you're little one is doing well and I feels so enlightened in all of the learning I've done about a condition that I didn't know existed five months ago.

After a very long day yesterday, we found out that Serenity's heart has stopped beating. I was paranoid because I couldn't get her to move no matter what I tried (including cold, sugary things and lying on my left side) and didn't want to wait until our appointment on Friday so I got in touch with my midwife. They are going to induce me tomorrow. I guess this means that I once again "graduate" from this board and toward a loss board. This has been one heck of a journey. I am wishing each of you the best in your high risk pregnancies. I understand how challenging it can be. Thank you so much for your support ladies, and I hope to see you "around" in the future. We will likely still TTC at some point, but we need to get through the grieving process first and I have no idea what that will look like. We so appreciate your thoughts and prayers.

In all sincerity, does anyone know if there is an appropriate board that I can join at this point? I feel super lost and scattered and would love to connect with others who have been through this.

ajsweeton

@lindseyts. I'm so very sorry for your loss. There is a loss board here on TB which is filled with wonderfully supportive ladies who for one reason or another have lost a late term baby or a child. I've found them to be very comforting, and I hope you will as well.

Ylvelill

Sending good thought to you and your family in this sad time

haziedaze

@lindseyts I'm so sorry for your loss. I agree with the others the Loss board will welcome you with open arms. You haven't delivered yet, but you have suffered a lot. They may be supportive with the next steps in this difficult process. Hoping that you are surrounded by love at this difficult time.

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LyndseyTS

Thank you for your kind words ladies. The birth was difficult, but I think what we have to deal with going forward is more so. I have connected myself to the loss board and think you're right...it will be helpful. I probably won't be around here too often anymore. I wish each of you the best in your pregnancies going forward. We are fortunate to be surrounded by lots of love and support at this time.

flerlgirl

@lyndseyts, I am so sorry for your loss. If there is anything we can do for you please let us know. I'll be praying for you.