Posted (Tina) in All Posts on May-11-2007

Today, we went to see Dr. Hobbins. He was a really sweet man with a great disposition. Once again, Dr. Henry Galan and his network of doctors were proving to be more educated and much more tactful with us, considering the circumstances.

Interestingly enough, he began by asking us about what we knew about CDH and what where we were in the process. We expressed that we were aware the case is severe and that we were not interested in in-utero surgery. Our plan was to carry full term and go to Gainesville, FL to deliver the baby, based on the expertise and survival rate being noted by Dr. David Kays at Shands at the University of Florida.

As soon as Dr. Hobbins realized that we were not interested in in-utero surgery, he relaxed a bit and decided to open up. He confirmed that he thought that was a good decision. He noted that it is still very experimental, that the effects can be detrimental to the mother and that often times, these programs inflate their numbers, so that they can get candidates. It was good to hear this from a 70-year old doctor, someone who was immersed in the industry. He did find it a bit odd that he had never heard of Dr. Kays…

Once he finished the ultrasound, these were the findings noted on his report:

Abnormal findings were localized to the fetal chest:
1. A large diaphragmatic hernia was noted through which a protruding stomach, small bowel and some liver.
2. The heart was markedly deviated to the right, compressing the right lung.
3. The head circumference to lung area ratio was .81
4. By VOCAL methodology, the right lung volume was 6.4 mm3, which is between 2.5 and the fifth percentile.

I have indicated to this nice couple that today’s ultrasound evaluation speaks for a rather gloomy prognosis for this fetus. They have researched the available information on the Internet and seemed to be leaning towards a delivery in Florida, but are not interested in intrauterine surgery for this serious condition. They are also not considering termination of the pregnancy. I told them that if they need any other help, we would be available to them at a moments notice. We were saddened to pass this very bad news to this couple.

At the end of the meeting, you could tell that Dr. Hobbins had a heavy heart. He apologized, said it was just extremely bad luck and gave us a hug. He also asked about out insurance, to which I replied that it is pretty good, but I wasn’t sure. He made a comment which indicated that this was a freebie – – he wasn’t going to even submit it.

I left feeling sad…I knew we were taking the path and proceeding as we should, so that we hear the most opinions and have the most information about her condition. But every doctor in Denver was so grim about the prognosis. I know it is very serious and that she might not make it. I just wanted to hear from someone locally that it was admirable that we were fighting for her life and trying to give her a chance. No medical professionals in the Mile High City felt that way. They looked at us, feeling sad, but thought we were just being unrealistic with optimism.

This is why we need to go to Florida…

Post a comment

Name:  (required)
Email:  (required)