Cystic hygroma in baby

[Eldaadatoz]

Hi,I don't know why I am writing this but probably going through the worst week of my life. I am pregnant 12+5 weeks, my second pregnancy, however first pregnancy in UK so I went to visit my doctor in Turkey who delivered my first born and followed all my pregnancy. I am in utter shock now, because he told me that the baby has cystic hygroma, a very big tumor, in his neck and all over eudoma which means his lymph system is not functioning. It is possible that the baby will develop heart failure too in the future. He measured his NT as 7.2 mm which is thr highest measurement that I have heard so far, as NT should be lower than 3 mm. He told me that this profile also brings possible and multiple chromosomal abnormalities and genetic defects too, mainly Turner syndrome and possibly Down syndrome. He did NIPT test to me but he indicated that he has never seen in such cases that NIPT would show a low risk in chromosomal abnormalities so it will come. Bad as too.

I have my first screening in UK next week, and possibly they would tell me the same thing. When I search in internet, it says that babies with these kind of cyst in their neck have a 90% death rate while pregnant or still birth.

I don't know, I just wanted to ask if there is anyone that had to come through this kind of incident although I hope no one had to go though a situation like this. I don't know if anything can be done, but maybe some advice or some info what the UK processes like in those situations may help.

[Channie1983]

Hi

Although I have not been through what you and your beautiful baby are going through I wanted to at least offer support. The UK process from my personal experience of when your baby is very ill is that they will support and guide you through each step always putting you both first. They will give you options along the way but each decision will be yours giving you control in a situation you may feel you don't have much control over. You will not be alone even though you may at times feel so alone. My outcome was not a happy one but they have and continue to help where they can. Sorry I couldn't offer direct experience but wanted to at least respond in some way.

[Eldaadatoz in reply to Channie1983]

Thank you very much for your reply and support. I really appreciate your response as you said, I feel not so alone. Wish you all the best ❤️

[Dansolo92]

I am so sorry to hear this. It is a mother's worst nightmare to get news like this. All we want to do is take care of our babies and feel helpless when things are out of our control.

I had a very high risk pregnancy with gestational diabetes with my last pregnancy with baby number 4. My son was born with a lump on his neck. It's took us a year but he's finally been diagnosed with Cystic Hygroma. It wasn't detected during pregnancy but to give you a little bit of hope he's a very happy and healthy 1 year old. It's very different circumstances for us but the UK doctors will be able to tell you more and see what they can do for your baby. Hope everything goes OK xx

[Eldaadatoz in reply to Dansolo92]

Thank you very much for your kind reply. I am glad to hear that your baby is healthy and happy and you came throughout this after a difficult pregnancy. I guess days will show what happens

[Dansolo92 in reply to Eldaadatoz]

Keep us updated please. Always here if you want to talk xx

[Chantysal]

i just want to say im so sorry your going tru this 😩

[Eldaadatoz in reply to Chantysal]

Thank you.

[Eldaadatoz]

Fetal DNA test results were received and the baby turned out to have Turner syndrome. I was referred to fetal medicine unit urgently, and the cyst now was all over his body, almost reached to 4 times of size compared to 10 days ago. His abdomen and lungs were all filled with fluid and the specialist said her lungs impossible to develop, and he is expecting that her heart would stop any instant. He basically advised to end this pregnancy as there is almost no survival chance for her. I am so heart broken that I had to make this decision now..

[Dansolo92 in reply to Eldaadatoz]

Sorry I have only just seen this reply. I really am so sorry you had to go through this. Sending you all my love xx