It's a Girl and CDH

Arms!

Sucking my Thumb!

Look at my Cute Face!

April 25, 2008- 22 weeks 4 days

What an early morning, we had to be in Kansas City at 8:00 which is a 2 hour drive from our house so we had been up since about 4:30 that morning. We were both really nervous by this time wondering what the day would reveal. Of course we got to St. Luke's early and had no idea where to go so I called someone I knew from work who had also gone to St. Luke's for her ultrasounds and told us that we needed to go to the Peet center. We found it, valet parked and began the registration process. We finally got to start the ultrasound at about 8:45 and of course I had to have a full bladder, it felt like I hadn't gone for hours. The person performing the ultrasound was a RN and she was so nice. She was taking pictures and measuring different things making conversation with us and she asked if we wanted to find out the sex. I looked over at Brian and said only if there is something wrong. She continued to take measurements and pictures and I could see that she was focusing on the chest area. She asked again and I said that Brian could decide that it didn't matter to me. He said the same thing, that if there were any problems that we wanted to know the gender.

That is when she looked over at us, placed her hand on mine and said "there is something very wrong with your baby, but she's a Girl." I was so devastated and excited at the same moment. I had secretly been wanting a girl whereas Brian wants at least one boy. My thoughts raced and I squeezed Brian's hand harder than before. She continued her measurements and kept taking pictures and told us that the doctor would be in in a minute to continue the ultrasound.

The doctor came in and began to look at the pictures the RN had taken and went ahead and began his own ultrasound research. He then revealed to us the our baby had a Diaphragmatic Hernia. That basically means that part of the diaphragm is missing and the the stomach contents have moved up into the chest cavity where the heart should be and the heart has shifted over to the right side. Right away I knew that this was horrible news. The doctor finished up his part of the ultrasound and escorted us to what I called "The Crying Room"

Brian and I sat in the room for what seemed like forever waiting for the doctor to discuss the results. Then walked in a Geneticists, she asked us a lot of questions about our medical history and the medical histories of our families. Because this defect can be linked with several chromosomal abnormalities, she encouraged us to have an amniocentesis to determine any genetic involvement. They told us all of the very worst case scenarios and ultimately gave our baby a 50% chance of survival

The doctor discussed with us the different things that they use to determine the severity of the defect and the chances of survival. He determined that we had a Left sided CDH, which is much better than Right sided as far as prognosis goes. Also, the doctor said that they use a ratio called the Lung Head Ratio: LHR which is a measurement of how well the Right Lung is developing. The doctor told us that they want to see the number at least above a 1.0 and that our baby currently had a LHR of 1.5! How reassuring. Also, at this time the doctor said that there doesn't appear to be any liver involvement which is a good sign that the hole in the defect may be small. To me it sounded like if we could rule out heart involvement and any genetic involvement that we would be doing as well as can be expected. So just have to wait for tests to determine total involvement.

I asked if there was anything that they could do enutero to fix the deformity, but the doctor said that it hasn't showed to be very promising, but there is one surgery that is very risky that involves placing a cuff on the babies trachea to build up pressure in the lungs to aid in expanding them, but the research was based for the very worst cases and that he didn't recommend it and we were actually not good candidates for the procedure.

After we had some time to take it all in and break down and cry for a while, the nurse came in and asked if we wanted to have our amniocentesis today or schedule another appointment for a later date. Of course we wanted to have it the same day to get it over with. Since we were having it on Friday afternoon, the initial results would not be in until Monday and with the final results for 10 days.

We left Kansas City in a daze with a follow-up appointment on May 14, 2008 to have a fetal ECHO to determine heart involvement. They said that I needed to continue to see my primary doctor for my urine tests and for basic appointments, but all other care would be transfered over to the Perinatology team at St. Luke's.