My son's probelm

My son is now 14month old, but he has sufferred neurology twice already!!! :( :( :(
When I was in the pregnenency, through untrasound, I already know he has got the Spine Bifida around his bottom. So, at that time, I arrange the doctor and ready for the surgery after he has been deliverred. Actually, he is more serious than I thought, which called mylomeningocele. in order to proect him, so I chosen surgery labor. And he took neursurgery 8 hours after the birth. But, later we found he has problem for toileting, and it getting wose 6month after the first neursurgery, the neurodoctor said, "there is nerve conglutination with the seam". So, we took the 2nd neurology for the last hope to improve at that time he was 10month. 1 month later, we found a little bit improvements, but now seems getting worse again. The neurodoctor said, there is no way to stop the conglutination, normally there is 35% possibility for the conglutination.

Is that true, I do not want my son to suffer such neursurgery again without greater hope, but it makes me despair to see he has the daily sufferring on the serious constipation, and seeing him getting worse day by day. Who can help???

Is there anyway to improve? if his toileting cannot getting normal, Is there any longterm solution to deal with urinery & stool problem without hurting him.