We drove to Sacramento which is about an hour away. At this point, my mom, and sisters knew and were already praying. Kevin chose not to tell any family on his side until after this appointment. A guy thing I think. He is very logical and fact oriented. The concerns here were the enlarged ventricles in the brain, SUA (Single Umbilical Artery), and the CDH (Congenital Diaphragmatic Hernia). A little background on the SUA.....in a normal umbilical cord there are 3 vessels, 2 arteries, and 1 vein. We arrived and waited to be called.
They started the scan and it took about an hour. The technician said the doctor would complete the scan and talk to us about the findings. The doctor came in, a very nice gentleman, and explained that our baby did in fact have the CDH and SUA but he was unable to see anything unusual with her brain. He also said her heart looked good and he saw 4 chambers. Praise God!!!! I have learned that in this situation, there is good news, but it doesn't necessarily affect the outcome. However, I will praise God for every hurdle we cross.
He said her stomach was in her chest cavity and this causes undeveloped lungs. The hernia is on the left side. The genetics counselor came in and asked in terms of severity how was the liver involved. We did not at the time understand the significance of left side or liver up. She suggested that we may need to be referred to UCSF for a consultation by them. He said that would be an option.
He then suggested an amnio, which I agreed to and they did on the spot. The amnio I thought would prepare me for what to expect once the baby was born. They said they would do a FISH on the most common chromosomal defects associated with CDH. Which are Downs (Trisomy 21), Trisomy 18 and 13. ON a side note Trisomy 18 and 13 are what the journals say "incompatible with life". Then that we would get the rest of the results in about 10 days.
The genetics counselor then took us to her office. She gave us a print out of info on CDH and another on UCSF and their program. She explained that they like to get results out as soon as possible since we had the option to terminate up to 24 weeks.
Wait...did she just say terminate? I had not even fathomed the idea let alone imagine it would be an option. I politely that would not be something we would choose to do. She said that they would want to do an ECHO on the baby's heart and get the results back from the amnio prior to referring us to UCSF. UCSF will not intervene if the amnio came back with any abnormalities or the heart had any defects.
They scheduled the next follow up for August 27th. That appointment was very long and we were exhausted, but went home to be with our waiting children.
Ok this was way long..... sorry if I give too much information I tend to overstate the details
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Hi Teresa, I'm sure writing this all down is therapeutic for you, and also satisfies all the questions from friends and family that you surely are getting. You and your family are in my thoughts and prayers. I can't even begin to imagine what you all are going through. The FISH did not indicate Trisomy 13 or 18, right?
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