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Turners Syndrome
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Turners Syndrome

My girlfriend got pregnant and at 18 weeks we went to get our third ultra sound.  The doctor later called and told us tehre was  a problem. at the meeting with a different doctor she told us that the baby was a girl and that the ultra sound revealed a cystic hygroma and that she thought the baby had turners syndrome.  After she did an ultrasound she confirmed pretty much that the baby had turners syndrome.  She did the needle in the belly test and after that she had a real serious conversation about the babies future.  She said that the cystic hygroma is really big and that there is liquid in the lungs, around the heart and in the intestines.  She also said that the babies arms and legs were swollen due to maybe heart failure.  She told us straight up that the baby would not make it to full term that the would go to the doctor one day and that they would not be able to find a heartbeat and that was that.  A week later we went to our regular doctor and she found the heartbeat at 160 beats per minute and she confirmed turners syndrome.  A week later same thing its been three weeks and nothing.  Our midwife asked if we wanted to abort and we said no.

i guess i just want to know whats going on and what to expect. is the baby going to make it full term, if not how is it going to affect my gf.  What are the chances that the baby makes it full term???????
pleaze rspond cause im worried
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10 Comments Post a Comment
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971074_tn?1362763366
This sound very frustrating and brutal. So the tests were performed at 18 weeks...how far along is she now?
I wanted to tell you that a dear friend of mine has a daughter who is 13 with Turners Syndrome. I love this girl so much! She is an amazing teenager. I think the only thing that appears different about her is that she is short. Other than that...she is like any other 13 year old. Actually she is more mature than most 13 year olds I know. When she was about 8 she did have to start a series of injections (I believe hormones) to help her with her growth. I just wanted to share that with you because If your child makes it through the pregnancy, your child will be just fine with Turners. I'm not sure what to think about the diagnosis about the heart and intestines. I'm really reluctant to buy into diagnosis made before a baby arrives. That's just my personal hang up and lack of trust. I feel like you guys have decided to let nature play out and I really support that idea. If this was happening with my own pregnancy, I would continue with the pregnancy and hope for the best possible outcome. Bless you all!!!!
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202436_tn?1326477933
I don't know anything abuot turners but I can tell you how *I* would feel in this situation.  

Doctors CAN and have been wrong.  There is NO way I wuold terminate the pregnancy.  I would far prefer to let nature take it's course.  Even if the chances are slim that the baby would survive to term, they are not non existent.  

Now if the baby does not survive it's going to be very hard on you and your girlfriend.  Losing a child at any stage of life is extremely difficult.  I lost my first son due to a cord accident stillbirth. It takes time to heal and I strongly recommend that if that DOES happen (though I will pray it does not) that you and your g/f seek grief counseling.  

I agree with Spiket about continuing the pregnancy and hoping for the best outcome, but I wuold also learn as much as I cuold about turners as well.  
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Avatar_f_tn
I am sorry you and your girlfriend are going through this.

It sounds like the concern here is not that your baby has been diagnosed with Turners Syndrome but rather a complication of Turners which in this case is a very large tumor on your baby that appears to be causing heart failure.  Just like outside the womb, large tumors can be fatal depending on location, type of tumor, etc.

It wouldnt hurt to seek a second opinion from a specialist.  Also, you might want to consider genetic counseling too.
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Avatar_f_tn
I agree with spade22, i would get a secong opinion, you never now. I  myself was diagnosed with turners syndrome  luckily i am in  perfect health and have no signs of having turners beside short stature... dont give up keep positive best of luck to you both
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Avatar_m_tn
thank you to all who responded unfortunately i havnt had time to respond back because we were at the hospital.  last thursday our baby girl lost her fight with turners syndrome.  At a check up the doctor couldnt find a heartbeat and after an ultrasound we were at the hospital to induce my gf. we will seek genetics testing and grief counseling because i know that this is one of the hardest things ive ever had to deal with.
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1330108_tn?1333680904
I am so very sorry for your loss.
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505857_tn?1329685117
i am so sorry both you and your partner have had to go through this i wish you all the best for whatever your future holds :)
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1364497_tn?1295153371
Awww I'm so sorry for you both, Be praying for you both through this rough time!
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Avatar_f_tn
I am so sorry for your loss and know how hard it is to deal with. My husband and I so desperately wanted a family and had been trying for well over a year without any lucky. We were beginning to feel disheartened and thought that maybe we just couldn't conceive naturally. Then a miracle happened and i fell pregnant. Funnily enough the day i found out i was pregnant was also the day that i received a letter to say that we could now start fertility treatment. The fact that we had been trying for so long meant that this baby was all the more special to us. However, i became very ill about 3 weeks into the pregnancy and suffered from Hyperemisis. I spent the next 10 weeks being taken into hospital for days at a time to be treated. The hospital kept saying that the baby was fine and all was well. My husband and i then went for a scan and this is when we found out that actually all was not well. It was clear to us straight away before anyone said anything that something didn't look quite right on the screen. There was a huge amount of fluid around the head and stomach. We were told straight away that this pregnancy was highly unlikely to go full term or even another week and that our baby was very sick. We were referred to a specialist who did a CVS to confirm if it was Turners and we were told that our little baby would be lucky to have a 5% survival rate. The results came back and they confirmed it was indeed Turner's. We decided that the kindest thing to do was to stop our baby suffering as she had already had to fight so hard. Whether people think we made the right decision or not is up to them. Trust me it wasn't a decision made lightly! I had a termination at 15 weeks under general anesthetic and our baby girl Carina was born asleep on 10th September 2010. There is not a day that goes by that we don't think of her or miss her. She will never be forgotten and always loved. I was so devastated that i even thought of taking my own life as i felt that i should be with her but then i thought about my husband and how selfish that would have been of me. Some people find it hard to understand why i feel the way i do as it's not like i had gone full term. Regardless of this, to me she is still my daughter and loved just as much as if i had gone full term. I would have done anything i could to protect her and that included not letting her suffer. I am so grateful to my husband for all the support he has given me as other family members have not been the same. I am looking into counselling as i have not been coping and when i told my mother this (hoping for some support) she said "do you not think you are making a bigger deal over this than it really is. When you have another baby you'll forget this ever happend'. WRONG!!! this is a big deal and no i will not forget! All i have is my imagination on how she would have looked. It hurts so much not know what colour her eyes she would have had, what colour her hair would have been, what she smelt like and felt like to hold etc.. Even though i was so ill throughout the pregnancy i miss being pregnant and i would do anything to be pregnant again with her. As much as i want a family i am now so scared to become pregnant because all i can think about is something will go wrong and i never want to feel this much pain and heartache again. Even though i know Turner's is not genetic and the likelyhood of this happening again is so remote i just can't help thinking maybe something else would go wrong.
Sorry if i've rambled for so long but there are just so many emotions and i'm still feeling so confused by all that has happend.
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Avatar_f_tn
I am so sorry for the loss of your daughter. May God help you to cope and heal. My son and his fiance are going thru the same situation. She is devistated.I am going to print your letter and give it to her, to let her know she is not alone, and it 's not her fault. God be with anyone who has lost a child. I lost my 15 yr old son in a car accident, 8 yrs ago. It just never gets any easier.
Thank you for sharing your experience, it will help others.
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