How do you remain positive

when you find out your baby is not 100% healthy? My baby girl was diagnosed with turners syndrome yesterday and i can't seem to be positive about it. For those that aren't aware of what turners is, its when a girl is missing an X chromosome or it is incomplete. That means that is sterile and may have other complications like heart/kidney problems and have growth problems which will require growth hormone shots early on in life. Also she will need to go on hormones at about 11 or 12. How do i remain positive and enjoy my pregnancy? All i've been doing is crying

Re: How do you remain positive

I'm sure hearing news like that is difficult and it may be hard to feel happy. I think that the best thing to do is know that you are going to be your child's best advocate. You are going to have to be strong for her and do everything in your power to make her life positive and fulfilled. Find out what services your district has to offer. There might be many oppurtunities for you to have others come in to help with her growth and support her needs. Also, you might want to look into a group where there are other families going through the same thing. You can find support and comfort there.
With all of that said, enjoy your pregnancy. I have many friends who've been told their children will have downs or other complications and they've turned out just fine. Wait until she's born and go from there. Sometimes too much information might not always be best. There's always room for error with these tests. Good luck and stay positive!

Re: How do you remain positive

Please fm ml110. She's been VERY open (and a wonderful resource) about having Turners syndrome.

MANY hugs and prayers to you and your family.

ETA: Right now the news is SO new that of course you're feeling overwhelmed. How terrifiying it must be for you. Know that there are SO many resources, support groups, even LIF where you can get info and support.

Allow yourself the time to let this sink in.

Message edited 2/18/2009 6:25:18 AM.

Re: How do you remain positive

Posted by Porrruss

Please fm ml110. She's been VERY open (and a wonderful resource) about having Turners syndrome.

MANY hugs and prayers to you and your family.

Re: How do you remain positive

Re: How do you remain positive

Posted by newtothis

Posted by Porrruss

Please fm ml110. She's been VERY open (and a wonderful resource) about having Turners syndrome.

MANY hugs and prayers to you and your family.

I have spoken to her already and she has been EXTREMELY helpful. But of course i still have my doubts. Unfortunately i have no way of knowing if my baby will have a "mild" case or a "severe" case. And the dr's really just give you what "could" happen. You would think with how advanced science is they would be able to tell me what exactly will be wrong- but they cant
sorry, I'm just upset and angry (not sure what or who i'm angry at)

Re: How do you remain positive

I am so sorry to hear that you received this news. The positive is that you can prepare yourself and your future for giving your beautiful and special baby all that she needs. When you see that little girl nothing else in the world will matter to you.

The down side to research is that you read the worst. In fact, there are so many varying degrees of these diseases. You little girl may not have such a severe case in which life may be easier than you are expecting.

I'm sending you

Re: How do you remain positive

Re: How do you remain positive

As of right now, my blood tests are showing there is a possibility of a genetic disorder, and my OB actually mentioned the possibility of Turners. I have another round of blood tests and a sonogram and then possibly an amnio. I think the not knowing right now is the worst. My only advice to you would be now at least you can do research about the syndrome. Your baby is always going to be perfect in your eyes and that's what matters. She is going to need you (especially while she is still inside you) to stay strong for her. If you ever need to talk, please feel free to FM me.

Re: How do you remain positive

I agree with PP's regarding finding support, too much research may be harmful, her case may not be severe, etc. I'm sorry you've received this news. Also like mentioned, allow yourself to feel out your emotions and soon enough you'll come to a better understanding and acceptance to remain positive. Be very careful with the internet. It's great for finding vintage purple polka dotted socks but for medical research, it can be quite toxic. Find true real life resources and support groups.

If I were in your position, I'd do some research to prepare myself a bit but then I'd remain optimistic until was born and we know for sure. As I too have heard first hand cases of being misdiagnosed with certain conditions in utero to then give birth to perfectly healthy (or not as severe case) babies.

I wish you blessings and strength through your journey.

Re: How do you remain positive

wow...i am so sorry to hear that news and I dont even know what to say. However, whenever i was tested for these types of things with my pregnancies I remembered the mantra "Special children are born to special parents"

you will be a great mom and love your child unconditionally,,,my prayers are with u

Re: How do you remain positive

while my diagnosis was not the same as yours - i remember getting the call about 'there is a problem'.

In my life - i have never cried as much over any period as I did once that call came in. I spent a good week, (prior to our appointment with the genetic counselor) hysterical crying EVERY day.

Have you met with the genetic counselor yet? I ask because yes, while your diagnosis means something - the SEVERITY of it can change based on how you tested....(i believe - i know for us - this was true).

Please, try to hold out some form of HOPE until you meet with the counselor....

Re: How do you remain positive

Re: How do you remain positive

Posted by davenjess

while my diagnosis was not the same as yours - i remember getting the call about 'there is a problem'.

In my life - i have never cried as much over any period as I did once that call came in. I spent a good week, (prior to our appointment with the genetic counselor) hysterical crying EVERY day.

Have you met with the genetic counselor yet? I ask because yes, while your diagnosis means something - the SEVERITY of it can change based on how you tested....(i believe - i know for us - this was true).

Please, try to hold out some form of HOPE until you meet with the counselor....

Re: How do you remain positive

Posted by newtothis

Posted by davenjess

while my diagnosis was not the same as yours - i remember getting the call about 'there is a problem'.

In my life - i have never cried as much over any period as I did once that call came in. I spent a good week, (prior to our appointment with the genetic counselor) hysterical crying EVERY day.

Have you met with the genetic counselor yet? I ask because yes, while your diagnosis means something - the SEVERITY of it can change based on how you tested....(i believe - i know for us - this was true).

Please, try to hold out some form of HOPE until you meet with the counselor....

Thank you! We did meet with the genetic counselor yesterday. While he did inform us of what turners is, he did say there is no way to tell how "mild" or "severe" it will be. He said the way the X chromosome was split was very abnormal and very rare. So that scares the hell out of me. While i'm trying to think positive it's hard to when your terrified of the unknown of what could possibly be the issue. If only science could be more exact and tell you EXACTLY what the problem will be. It's tough to know that i will have to have a discussion with my daughter about how she won't be able to have her own children and that she will have to get shots everyday just to grow a few inches. I just don't know what to do

Re: How do you remain positive

My sister has Turner's Syndrome.



Please know, that my sister leads a normal, healthy, active life! She is 21 years old, is a full time student in college and works full time at a day care center as well.

She was diagnosed when she was about 9 or 10, when they noticed that she was not growing properly, but was put on meds to help her and she is at a normal height.

There are some limitations in her life... the fertility thing is one of them, but if she decides to have children, she would need the help of an infertility dr and would be able to have children. She may need a donor egg but she can carry a baby normally.. or she will adopt. She does have to keep on eye on her health more than the average person.. meds for her thyroid, and be diligent with getting checked out and not putting off dr appointments.

My sister has a great outlook on life.

Please FM with any questions you may have about the diagnosis.

Message edited 2/18/2009 9:34:17 AM.

Re: How do you remain positive

Posted by newtothis

Posted by davenjess

while my diagnosis was not the same as yours - i remember getting the call about 'there is a problem'.

In my life - i have never cried as much over any period as I did once that call came in. I spent a good week, (prior to our appointment with the genetic counselor) hysterical crying EVERY day.

Have you met with the genetic counselor yet? I ask because yes, while your diagnosis means something - the SEVERITY of it can change based on how you tested....(i believe - i know for us - this was true).

Please, try to hold out some form of HOPE until you meet with the counselor....

Thank you! We did meet with the genetic counselor yesterday. While he did inform us of what turners is, he did say there is no way to tell how "mild" or "severe" it will be. He said the way the X chromosome was split was very abnormal and very rare. So that scares the hell out of me. While i'm trying to think positive it's hard to when your terrified of the unknown of what could possibly be the issue. If only science could be more exact and tell you EXACTLY what the problem will be. It's tough to know that i will have to have a discussion with my daughter about how she won't be able to have her own children and that she will have to get shots everyday just to grow a few inches. I just don't know what to do

Re: How do you remain positive

I believe that you need to go through your mourning period right now. i gave myself about 3-4 days when I found out my soon to arrive son has a heart defect. There could be other abnormalities but at this time they think it is just the heart. He will require open heart surgery during his first week of life. I cried for a few days....and then said enough.

Now i know that I will be having a baby with yes some special needs but I am having a child. We will get through whatever we have to get through. The important thing is that this child is depending on you as a mother and you will be there. If I wasn't worrying about this then I would be worrying about something else.