KatharineS
11-01-2017, 02:49 PM
Hi,
Our son was diagnosed at 20 week US w/ LCDH. I had amnio done and array came back negative.
We also had extensive genetic testing prior to becoming pregnant (and have 2 beautiful healthy sons).
And, I also had the DNA blood test done at 12 weeks, again, all negative.
We realize there aren't tests for some of the syndromes, but, we are really worried. They ultrasounds I get each week al seem to indicate something different. One said no globes present, one said hypotelorism, one said only one globe present. globes lack sonolucency, lenses are seen but appear displaced superiorly.
Has anyone else come with these issues? Today we were told that the left eye will be much smaller than it should be and most likely will not have eyesight, the right eye will also be small, but not as bad, and may or may not have eyesight.
Mostly, in the pictures it looks like the baby is squinting. We are being told we have to wait til the baby is born but I would like to be prepared to be looking for other issues, not just the CDH.
I am scheduled to deliver at Swedish First Hill in Seattle on 11/27/2017 and we are told they will do the surgery 4 to 7 days after birth.
Thanks for responding,
Katharine
Our son was diagnosed at 20 week US w/ LCDH. I had amnio done and array came back negative.
We also had extensive genetic testing prior to becoming pregnant (and have 2 beautiful healthy sons).
And, I also had the DNA blood test done at 12 weeks, again, all negative.
We realize there aren't tests for some of the syndromes, but, we are really worried. They ultrasounds I get each week al seem to indicate something different. One said no globes present, one said hypotelorism, one said only one globe present. globes lack sonolucency, lenses are seen but appear displaced superiorly.
Has anyone else come with these issues? Today we were told that the left eye will be much smaller than it should be and most likely will not have eyesight, the right eye will also be small, but not as bad, and may or may not have eyesight.
Mostly, in the pictures it looks like the baby is squinting. We are being told we have to wait til the baby is born but I would like to be prepared to be looking for other issues, not just the CDH.
I am scheduled to deliver at Swedish First Hill in Seattle on 11/27/2017 and we are told they will do the surgery 4 to 7 days after birth.
Thanks for responding,
Katharine