Baby boy due 11/27/2017 LCDH, Seattle Washington issues with eyes

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

Hi Katharine! I am so sorry you are on this journey with CDH. I do highly encourage you to join our Facebook online support group, it is marked private and the only way to join is through an invite. I just sent you an invite, please let us know if you have not received it and we will figure out a way to get you to the group. The invite does need to be sent to an email associated to your FB account and we sent the invite to the email you registered with.

The sad part about CDH, is there is no known cause as to what causes CDH. It can occur in other syndromes, but you would more than likely be seeing something show on your genetic tests or within the amnio. I don't have any personal experience or knowledge to share with you in regards to the questions you have with your baby's eyes.

I am not experienced with Swedish First Hill in Seattle. Is this where the baby will be at or will they transfer to Seattle Children's? Have they done a fetal echo and a fetal MRI, both of these tests can offer more information than an ultrasound and if there could be something more happening than the CDH.

There are so many variables with a CDH baby and is hard to tell what will happen until a CDH baby is here and fighting.

Please ask us anything. Not many members post here much, many of our new moms are posting in the FB support group and then after the NICU journey, posting in our additional support groups we can add you too.

(((HUGS)))....one day at a time and keep focusing on the positive.