Tuesday, March 1, 2011

Fetal or post-natal surgery, that was the question...

Shortly after our diagnosis, we found research about fetal surgery. At first, we dismissed it because it was still considered experimental and the MOMS study had finished all of the cases that they were accepting. The surgery became a serious decision to be made after the study results were published. The results were released when I was 22 weeks pregnant, so our decision had to be made quickly. This in-utero surgery has to be performed before 25 weeks gestation, is only offered in three locations in the US (Philadelphia being the location we would pursue), and has many risks that come along with the benefits. We were feeling torn because deep down, neither of us felt that this was the right thing for our family, but we wanted to do absolutely everything we could to help Bennett. The surgery would require us to stay in Philadelphia for 3-4 months, and much of that time on bed rest. It would be a good thing to have the same doctors looking after you from surgery to delivery, but we were concerned because we would like the doctors in Indianapolis to know Bennett's case from the beginning. In Philadelphia, a support person is also required to be with you at all times. Andrew was worried about his business and all the practical things like bills, care of our house and dogs, and our insurance that already denied the surgery so we would have to work with them to hopefully get it covered, and I was worried about leaving Matthew behind for any period of time. We were both worried about the stress all of this would put on our family, mainly Matthew. These were all things that we knew we could deal with and in the scheme of things, did not seem so bad to sacrifice for a few months. The real things to consider were the benefits of the fetal surgery versus the safety of Bennett and myself. The one thing that we knew was that Philadelphia will not perform the surgery in-utero if the lesion starts low enough on the spine (lesion starting at S2 or below) because they say the risks outweigh the benefits with a low lesion. The doctors told us that Bennett's lesion was sacral, so we had hope that it would be low enough to have a better prognosis with the post-natal surgery. The concern for me was that we know that Bennett has arnold chiari malformation and hydrocephalus, both commonly found with spina bifida. This made me very interested in the surgery if it could stop any more buildup of fluid in his brain. Also, I have read about many instances where the lesion location was not accurately portrayed by the ultrasound, so we would be very upset if we found eventually that his lesion was higher on the spine than expected. The benefits of the fetal surgery, as I understand, are that the damage to nerves may be stopped with the surgery. Any damage that has been done will not change, but the amniotic fluid flowing through the lesion causes damage throughout the pregnancy and that could be stopped early. This may give the baby a better chance of having more use of legs and lessens the likelihood of needing a shunt after birth. On the downside, it's basically guaranteed that you will have a premature baby if you do the surgery, with the average birth at 34 weeks. It's also a major stress on my body because I have already had one c-section, and this surgery plus delivery would account for two more.

We researched all of the study results and talked to our doctors, along with speaking to the doctors in Philadelphia. Eventually, we decided that we should at least go to Philadelphia for the consultation to see if we even qualify for the surgery. We set up a second Level 2 Ultrasound at IU North to see if anything had changed with the baby at 23 weeks. We had the same results as before: a sacral spinal lesion, arnold chiari malformation, and the doctors said mild to moderate hydrocephalus at this point. We had the doctor send the results of the ultrasound to Philadelphia to be looked over. I spoke with the doctor in Philadelphia the next day and my main question was if Bennett's lesion was too low for the surgery. St. Vincent's MFM was the location of our first ultrasound, and they concluded that the lesion was around S2-S3. The second ultrasound was at IU North and they agreed that the lesion was mid-sacral. The doctor in Philadelphia restated that they would not perform the surgery if the lesion started below S1. She said that we were welcome to go to Philadelphia for a consultation, but that they would determine lesion level by ultrasound as well. We decided that we felt confident enough that two MFM departments found the same results, and this doctor was looking at the u/s results as well and not saying that she thought it could be incorrect. As soon as we made the decision, our family stress level went down and we felt so much better. We have set up our appointments with the Riley Neurosurgeon and Developmental Pediatric area at Riley. We are still seeing our regular OBGYN and have met the high risk doctor who will be delivering Bennett. Right now, it's just a waiting game and I'm hoping that our future appointments will help us to feel more comfortable with the post-natal surgery or surgeries that Bennett will endure. Overall, we feel that we have made the best decision for our family with our current knowledge and information.


Cassie said...

Congrats on the baby boy! My 5 year old, Caleb, was born with SB. I remember vividly learning about the diagnoses. I was terrified. I wish I had known then how wonderful Caleb was going to be, I probably wouldn't have been so scared. He is such a blessing.

Amanda said...

It sounds like you guys made the right decision. My Nick's lesion is S1 and we live in Canada so surgery was never an option. The new research adds to decisions and choices for parents. But you guys got lots of info to make your choice!
Like Cassie I wish I had been able to see into the future and see how happy Nick would be, and how happy he would make us and our family.