Dr. Moriarty appointment today went well. He is a typical neurosurgeon, not that I've met many...or any, but exactly what I would have expected. Odd sense of humor, a little quirky, but very serious about his job. He's the man for us! I am glad we were given the opportunity to meet him given that he isn't doing anything right now for the baby. He will decide his surgical plan of action after he is born. Every spina bifida case is different, therefore until he actually sees what the defect looks like, he can't give us a whole lot of insight.
What we did learn today...
* They will do an MRI or CT scan very soon after he is born to get a better look at the spine before surgery.
* We should expect surgery on his spine within 24-48 hours after he is born. This surgery typically lasts 4-5 hours.
* Dr. Moriarty usually inserts an EVD (External Ventricular Drain) to relieve any fluid on the brain that then travels through the spine (cerebral spinal fluid). This is similar to a temporary shunt, except this drains the fluid out of the body, where a shunt drains the fluid to another location for the body to absorb. He believes this helps the spine area to heal faster without the added pressure from the fluid. This makes perfect sense and is something we have not read about in other cases we have researched.
* He will most likely not consider a shunt until 10-14 days after he is born. After the spine has had time to heal and Dr. Moriarty has been able to monitor the fluid draining through the EVD. This will give him much better information to see if the shunt is even necessary. Approx. 10-15% of Spina Bifida patients will not need a shunt. We will just have to wait and see.
* Dr. Moriarty isn't a big fan of trusting what the ultrasound shows. He wants to see things for himself after the birth. He told us this information several times, but right now what we know from the ultrasound is all we know. I understand why he says this...1. could be worse than what they think they see in the ultrasound. 2. could be BETTER than what they think they see. However...what the ultrasound shows is all we know! He does not want us to worry about the fluid levels/changes we see in the ultrasounds. We can worry when we actually know what to worry about when he gets here. We'll see about that!
* The lower the defect, the less likely he will need a shunt. That is something new we learned today. I didn't know that was related. His defect is really low (S1-S2). Before Dr. Moriarty knew where BabyBoy's defect was located he just mentioned a defect at S1 should have minimal chances for bowel and bladder issues and even less chance for leg muscle weakness. But again, we'll just have to see when he gets here. Hopeful news to hold on to though.
* There is no need to see Dr. Chariker (Pediatric Plastic Surgeon) for a consult while I am still pregnant. He will be notified when the baby is born and be there for the spine closure. Thankful for one less appointment! We will also not see Dr. Moriarty again until he comes to check out the baby after he is born. He will be notified when he is born, but will not be there for delivery. When I asked Dr. Moriarty if he would be in the delivery room, he said "not even as a joke!" He was not at all interested in any part of that. He has an odd sense of humor, remember.
* The worst news for last...we are looking at a minimum of a 2 week hospital stay. He will need to be on his belly for 10-14 days after surgery. That means absolutely no holding him for at least those first 10-14 days. This is heart breaking, but we know that is just the way it will be. At least we know now and have time to prepare. Does that make it any easier? Not at all. But it's what we will have to endure to allow him the proper time to heal. He said he will make a rubber stamp that says "no, not today" if I ask too much. The sense of humor again. He laughed a little. So, I will try to be good.
We are very thankful for the opportunity to meet the man that has such an important job to do for our son. We fully trust his expertise, as he comes very highly recommended. We are also thankful for such an amazing surgeon to be so close to our home. I have read about many families who have to travel/move to another location to find the best doctors/hospitals. Luckily we only have to travel about 40 minutes to have the best of the best.
Please continue to pray for all of us as I do my best to keep BabyBoy safe and healthy for now!