Sad news...

[Babyduo]

I can only imagine how hard this is. Take one day at a time! I will pray for you!

 

[Amberyll23]

my thoughts and prayers are with you and your precious baby girl.

 

[BrightLights]

So we have a final diagnosis. Our baby is a precious little girl. They are almost positive she has Turners Syndrome with a lot of swelling around her entire body. There is a very large Cystic Hygroma that goes around the back of the neck and is around where the ears are. Turners Syndrome in itself is not fatal, the prognosis is only so bad due to the swelling and the pressure it is putting on her organs and heart. We saw her tiny little hands and feet and everything else is perfect except for the swelling and the Hygroma. We are going back later today so they can do a fetal echocardiogram on her heart to see if there are any defects. We seen the Genetic Counselor and they are expecting her to pass away in utero or she may survive this. Based on all the facts we cannot make the decision to terminate. There are cases of the Hygroma going away and so we will have very frequent ultrasounds to monitor her and see if it gets any better. We are not giving up on our baby girl Thank you for the prayers and kind thoughts and we will need them in the days to come. We are strong and will stay strong for her.

Im so sorry to hear you are going through this.

I just wanted to share my daughters story with you. All was fine with pregnancy until 20 week ultrasound with Eva and it was here we got told she had a high accumulation of fluid on her abdomen and more dangerously on her chest cavity (meaning her lungs couldnt grow properly). She had 1 1% chance of survival at this point. We saw a specialist in fetal medicene once a week who took off fluid from her chest with a needle through my abdomen, it would fill with fluid straight away again but it gave her better chances of her lungs growing. We had an amnio done at this point which returned with no syndromes BUT we now know that she has a mild form of Noonans syndrome (similar to Turners). By 28 weeks the fluid on her chest and abdomen had totally disappeared and resolved and we were thankful for a miracle. But then at 36 weeks fluid came back with a big vengence making her very poorly. At 37 weeks she was born and very poorly didnt breath at birth and got taken straight to intensive care in a higher care hospital, here she fought for 8 weeks in NICU and is now a healthy happy 1 year old! There was points I thought she wouldnt make it and it was a horrible journey but she is here now and happy and healthy. It scares me that we even thought about terminating when we thought there was serious problems because she has no problems at all now health wise and has such a gorgeous personality.

Please dont give up hope. I hope your baby is a miracle as mine is
x

 

[cgav1424]

TandJ - you've got a fighter of a little girl in there! I will be praying for you guys! Have faith! xx

 

[mommatoB]

prayers for u and ur precious baby girl

 

[nzjade]

My thoughts and prayers are with you and little Isabelle. May she continue being a little fighter!

 

[aimee_1691]

Omg Hun I'm so sorry to hear this. Cannot begin to imagine how your feeling!! Big hugs xxx

 

[lpjkp]

I'm so sorry to hear about this...I cannot begin to understand what you and your OH are going through...stay strong, and I'll be thinking of you all xxx

 

[pianogirl]

Wow, you are so strong! Keep fighting for your precious little daughter. You will be in my prayers. Keep us all posted!

 

[xJessie91x]

Wishing lots of luck xxxxx

 

[fertiliciousx]

praying for a miracle for you hun...try to be strong x

 

[Ananya]

So we have a final diagnosis. Our baby is a precious little girl. They are almost positive she has Turners Syndrome with a lot of swelling around her entire body. There is a very large Cystic Hygroma that goes around the back of the neck and is around where the ears are. Turners Syndrome in itself is not fatal, the prognosis is only so bad due to the swelling and the pressure it is putting on her organs and heart. We saw her tiny little hands and feet and everything else is perfect except for the swelling and the Hygroma. We are going back later today so they can do a fetal echocardiogram on her heart to see if there are any defects. We seen the Genetic Counselor and they are expecting her to pass away in utero or she may survive this. Based on all the facts we cannot make the decision to terminate. There are cases of the Hygroma going away and so we will have very frequent ultrasounds to monitor her and see if it gets any better. We are not giving up on our baby girl Thank you for the prayers and kind thoughts and we will need them in the days to come. We are strong and will stay strong for her.

Im so sorry to hear you are going through this.

I just wanted to share my daughters story with you. All was fine with pregnancy until 20 week ultrasound with Eva and it was here we got told she had a high accumulation of fluid on her abdomen and more dangerously on her chest cavity (meaning her lungs couldnt grow properly). She had 1 1% chance of survival at this point. We saw a specialist in fetal medicene once a week who took off fluid from her chest with a needle through my abdomen, it would fill with fluid straight away again but it gave her better chances of her lungs growing. We had an amnio done at this point which returned with no syndromes BUT we now know that she has a mild form of Noonans syndrome (similar to Turners). By 28 weeks the fluid on her chest and abdomen had totally disappeared and resolved and we were thankful for a miracle. But then at 36 weeks fluid came back with a big vengence making her very poorly. At 37 weeks she was born and very poorly didnt breath at birth and got taken straight to intensive care in a higher care hospital, here she fought for 8 weeks in NICU and is now a healthy happy 1 year old! There was points I thought she wouldnt make it and it was a horrible journey but she is here now and happy and healthy. It scares me that we even thought about terminating when we thought there was serious problems because she has no problems at all now health wise and has such a gorgeous personality.

Please dont give up hope. I hope your baby is a miracle as mine is
x

Brightlights - my daughter suffers from Costello syndrome. They both have similar gene mutation and similar characteristics. We have come across Noonan syndrome many times.

Lovely to know your daughter is doing well x

 

[thethomsons]

Sending lots of good luck vibes and hugs hun xx

 

[TandJ]

Thank you so much ladies

 

[Lisasmith]

Ill be sending all the positivity I have to you and your little girl

 

[TandJ]

I went into labor on Tuesday morning. I gave birth to our precious baby girl Isabelle Skye at 8:14am on February 13th. She weighed 15 ounces and was 8 and a half inches long. She was exactly 20 weeks old. She passed away either before or during delivery. She was so beautiful and tiny. We got to hold her for the entire day until about 9:30pm. We kissed her and made sure she knew we loved her so much. We took lots of pictures too. I wont have access to a computer to upload pics until next week I think. We are so sad and miss her so much. She was very swollen and sick. Her heart could not handle the swelling. She will be in our hearts forever.

 

[annio84]

So sorry to hear that.

 

[greeneyes0279]

Sorry for your loss!

 

[Purplehippo]

Really sorry for your loss

 

[xJessie91x]

Massive hugs babe. My heart aches for you, so sorry xxxxxx