Serious problem with our baby

On Tuesday we went to the OB/GYN for our 22 week ultrasound. We brought Brianna (the big sister) and Grandma Dayle to see the new baby. Towards the end of the ultrasound the technician was taking extra pictures of a whitish area that she wanted to have the doctor review. Knowing that something disturbing would be discussed, we asked Grandma to take Brianna to McDonalds until our visit was over. She knowingly did so.

The doctor came in and told us that there was something wrong with the baby, but that neither she nor the senior doctor of 25 years could conclusively say what it was. She said it was very important to get an appointment with Maternal Fetal Medicine in Hartford the next day. She would discuss the ultrasound with those high-risk pregnancy doctors the next morning and get us in ASAP. It turns out that the next day Maternal Fetal Medicine set us up with an appointment for Dec.6 - a week later. That did NOT FLY! We called the original OB/GYN and she was able to get us in on Friday.

At the visit to Dr. Borigada in Hartford, the ultrasound technician focused on a large white area. Victoria asked what the white area was, the technician said that that was what you are here for. Soon thereafter Dr. Borgida came in, and after a barrage of questions from Victoria and a lot of looks at the baby's heart, proceeded to explain to us that this was a piece of undeveloped lung tissue that filled up the right lung cavity, called a CCAM, most likely type III. I asked if that meant basically a tumor, and he said a benign one, but yes.

He explained to us that in some cases the CCAM can shrink to a manageable size (or at least not grow, while the "normal" baby and lungs grow around it) to make surgery after birth an option. In other cases the CCAM continues to grow and crowd the heart until the baby suffers hydrops (circulation to the heart is cut off and the body fills with fluid), or heart failure and dies. He said that we would watch the progress with ultrasounds every two weeks, starting first with an MRI in one week (Wed 12/6) to look for what viable lung tissue is there, and to be sure that there is no fluid build up in the body (again, sign of hydrops).

He also told us that there is nothing to be done. We asked if fetal surgery was possible and he said no. He outlined the option of waiting it out and hoping for the best or termination of pregnancy. Being that we were at 22 weeks pregnancy, he informed us that termination is only an option in Connecticut until the 24th week. I asked if we should be looking for a trend of increasing size or decreasing size in the tumor. He said that was exactly right. Being that we would not meet with him for 2 more weeks for the next ultrasound, we would have no useful data to make a decision. He said the only other termination option was one doctor in Kansas (how ironic is that - Bible-belt Red state and all!). So basically we were flipping a coin on whether we would have a baby that will survive or not. And he said that there is a fair chance the CCAM would shrink, but he also cautioned that it is VERY large, visually it seems to take up about 1/3 of the baby's body (similar to the one in this video).

So upon arriving home I immediately looked up CCAM, and the first Google link led to San Francisco Children's Hospital, where they have 3 separate procedures for fetal surgery. They have saved many children with similar CCAM's. The statistics are that there is a 61% survival rate for these procedures. That is a damn good number, especially considering that they do not operate until hydrops (heart failure) is already in progress, which guaranties death without intervention. Further research also led to the Children's Hospital of Philadelphia and a Children's Hospital in Cincinnati. These appear to be the only places in the country to offer fetal surgery. We were quite angry that our doctors did not offer these places as an option, and we are going to be researching their success ratios and experience before making any decisions where to go next.

Next steps are to contact San Francisco, Philadelphia and Cincinnatti hospitals on Monday to get our ultrasound films sent to those hospitals ASAP, and then wait for the results of the MRI and the consultation from the other hospitals. We will pick a hospital based on their success rate and volume of operations. Even if the tumor appears to be reducing itself, surgery will most likely need to performed at delivery with the placenta still attached (C-Section delivery manditory), and that is a surgery that Hartford Hospital cannot perform. It is called an EXIT procedure. So it does not appear we will be delivering at Hartford.