What we know so far of Natalie's SB

Its been almost two months since Natalie was diagnosed with SB, in that time we have done several tests, and seen several Doctors that are helping us understand SB better. We know what we have to do now in order to give her everything she will need. As soon as she is born she will be moved over to Children's to have surgery on her back to remove the bubble and close up her back. There is no cure for SB, just treatment. Natalie's lesion is L5 to S1, Dr.s don't know specifically where it is but that is where the MRI showed the lesion to be around. Dr.Weprin, Natalie's neurosurgeon gave us a good prognosis, again its just a prognosis but with that prognosis we have gotten so much faith and hope that it will all be ok. Dr. Weprin informed us that children born with SB have normal IQ levels, look normal, some even play sports, get married, and have children. Dr.Weprins prognosis was that she will most likely need ankle braces, or worst case a walker. Most children with SB also develop hydrocephalus but so far Natalie doesn't show any signs of that, we pray it stays that way, but fluid does start retaining on her brain she would also have surgery to install a shunt which will help the fluid leak down to her stomach. Another issue Dr. Weprin made us aware of is that Natalie might have uncontrollable bladder and bowel movements, the problem with that is that she might not be able to control it, as a baby that is fine the problems start arising as she grows older but again he informed us that their are ways of preventing that and surgeries for it as well. On July 15th we have an appointment with Natalie's developmental specialist at Scottish Rite we have so much hope he will also help us out so much. I am actually excited about this Dr. he will be a grand help on helping us prepare for her. He will be able to show us and pair us up with other parents dealing with the same issues and help us financially as well.

I don't know why God has done this to us, but the only option we have now is to be strong for Natalie.

May 3rd

So anxious for this day. We had an appointment real early in the morning for an anatomy scan to determine the gender of the baby with Dr. Peters. We were both so nervous and happy to find out what we were having, the nurse came in and did the sonogram, looked over everything, left the room and informed us that the Dr. will be in shortly to go over everything we were seeing on the screen. Everything seemed normal so far. When Dr. Peters came in he introduced himself and performed the sonogram. I kept staring at him for an answer if it was a boy or girl, but it seemed like there was something else he was looking for. I felt his shift immediately switch up on us and then I knew from the bottom of my heart something was wrong. After a couple of minutes of him examining the baby he let out a big sigh. I immediately knew something was wrong, he hadn't even said anything to us, but my heart was starting to break into a million pieces. He informed us that the baby had Spina Bifida ( myelomeningocele ) the most severe type of spina bifida.  Immediately I broke into tears, I didnt know exactly what it was besides the fact it has something to do with the spine and it wasn't good. I remember my heart filling up with sorrow and seeing Frank's face full of confusion because he just didn't know what it was. He just stared at me and I nodded my head and he bursted into tears as well. I will never forget this day, until this day I remember it as if it was yesterday.

When we thought everything was going to be perfect.

Frank and I always thought we couldn't have a family, it just wasn't happening. But on January 19th we found out we were expecting. Our first Dr. visit with our OBGYN was on February 17th. May 3rd was the scheduled date to find out the babies gender. Like all couples expecting, that date seemed like an eternity away. Before that appoinment they ran blood work for neural tube or any other abnormal signs. So far everything seemed normal, the Dr. was not concerned with anything.