Rested ... so now to tackle the MOMS study

I had a wonderful couple of days with my cousin, Kristie Robinson. We ate at In & Out and Coldstone, soaked in the "hot" tub (don't worry, my feet only), scrapbooked, read books, slept in and did lots of talking. I feel like a new person. It is amazing how emotional drain can really wear you down physically. My cousin is a nurse and a mother of a wonderful son who has special needs, so she was able to answer a lot of my questions and encourage me so much.

So.. now that I am rested, I will try and tackle the MOMS study, Management of Myelomeningocele Study. Doctors are able to do surgery on babies with spina bifida before birth in order to fix the spinal lesion which is routinely fixed at birth. This surgery has been being done for over 10 years. However, currently it is only being done at 3 hospitals and you must be accepted into the study to have it done. We have done some research and continue pursuing being accepted into the study. We are in the process of faxing and mailing the MANY medical records that they need. The surgery must be done before 25 weeks, so this option is only available to us for about 4 more weeks.

Once the MOMS study receives our records they will decide whether we qualify or not. There are reasons we many not, but the biggest one is that both Elizabeth and Hannah were born at about 36 weeks. They do not usually accept you into the study with a history of pre-term labor. If they decide we qualify for the study, we will be sent to San Francisco, Nashville, or Philadelphia for 2-3 days of consults and testing with all the doctors involved in doing the surgery. They would try to send us to San Francisco, but there are no guarantees. During that time we would get to ask lots of questions and get all the information. At the end of the time, we would decide whether we want to participate in the study, and the doctors would also decide if we are still a candidate for the study.

If both sides decide to participate in the study, we would then be placed into the "randomization" process. 50% of participates receive the surgery in-utero, and 50% receive the standard of care surgery at birth. If we received the standard of care, we would be sent home and would return to San Francisco (or other location) and the baby would be delievered by c-section at 37 weeks and have surgery at that time. If we received the in-utero surgery, it would be scheduled within 1-2 days and I would need to stay there until the baby it born by c-section at 37 weeks. Obviously, that would be a real challenge for our family.

The study provides travel, meals and lodging for me and a support person who must be with me during the entire time. It does not, however, provide for our other children.

We continue to pursue this option as long as the Lord leaves the door open. If the door shuts, we will trust His hand. Are we positive the in-utero surgery is the right path? No, we know that it is a long-shot. But, if all the doors open,we will trust that our God, who is not limited by odds, opened them. We do know that we can walk away from the study even after the consult if we do not feel a peace about it, so we are not committed until we have all the information.

What are the risks? The biggest risk is of premature delivery caused by the in-utero surgery. Obviously, that is a big concern for us. It is our understanding that 150 of the 200 surgeries MOMS is trying to do have already been done. I believe 3 have resulted in the death of the baby.

What would we pursue this? We know from ultrasound that our baby is kicking her feet and moving them, however, we also know that damage to the nerves done by the amniotic fluid, her growth in-utero, as well as her delivery may cause more damage. It is possible that by the time she is born, she may not be moving them. The longer the nerves stay exposed outside her body, the more chance they have of being damaged. There are some initial positive results from the study, though nothing is conclusive at this point. Children with spina bifida need shunts to drain fluid from the brain about 80% of the time. There is promise that those who have surgery in-utero have shunts much less, or at least delay the need for shunting. Since shunts are one of the biggest causes of brain infection, complications, etc, that is reason for consideration. We are learning a lot about spina bifida and current treatments just by pursuing this, so that alone is helpful. If we are in the study our baby would be followed up with at several intervals as she grows.

We would appreciate your prayers as we pursue the study and that we would trust God's leading, wherever He leads. The thought of 12 weeks in another city, possibly without my children, is enough to make me not pursue it. But, I know that in the grand scheme of life 12 weeks is not too much to sacrifice for our precious baby if this would really be helpful for her. Only God knows, so we leave it in His hands.