It was 2 years ago today that we went to the University of Chicago for our follow-up ultrasound. We knew that there was fluid in the belly but we did not know of any elsewhere. I had read the word hydrops and saw some mention of Down Syndrome. We knew that if the baby was born with Down Syndrome we would love him or her the same. I have worked with people with disabilities in the past and they are some of the most beautiful people in the world.
In an ironic way, Jeff and Lisa (my brother and sister in law) were also at the same hospital having weekly checks for their twin daughters who had TTTS. We were very concerned for their safety and they were born healthy except for a few minor health issues.
We went back for our ultrasound and we thought that our baby looked absolutely beautiful. The technician did not say a lot but explained what we were seeing. The ultrasound lasted about an hour and again we thought everything was fine.
In just a few short minutes our world came crashing down. The genetecist and someone else called us back to a room and asked what we knew about the baby. She said the baby also had fluid behind the neck. She explained that the baby had hydrops (fluid in the chest, skin, abdomen, etc) which is really bad with only a 10% chance of survival. (OK--that's fine--we'll fight for this baby is our thinking). Then, she says but the even more concerning thing is the fluid behind the neck which is called cystic hygroma which has a 0% chance of survival (why wouldn't you just say this in the first place instead of giving us a chance of hope?????) Then she gave us the option to abort which we were not interested in and once we decided that it was like ok see you later.
This was one of the worst things that I have to say about that hospital. There are many more options than abortion and it is a major hospital located in Downtown Chicago. They should have a list of perinatal hospices as well as other specialists for the different disorders to give people a second opinion. Also, I should have had a chance to meet with a Maternal Fetal Medicine physician who would lovingly show me the ultrasounds (which I could keep if I wanted to) that explained exactly what they were seeing. Once they decided that my child was not "viable" they gave up and forgot that the baby was precious to our family and should be given the respect that every other baby received. This is one of my biggest regrets. I wish that I would have demanded to see a MFM and also receive a DVD of the ultrasound and printed images of all the pictures :(
In that small consultation room it did not really hit until we went out in to the waiting room and we started making some phone calls and then it all started caving in. We could not believe that this child that we had prayed so much for would not be a part of our earthly family.
4 years ago