marie
11-30-2007, 04:37 AM
Hello! I'm sorry I haven't introduced myself earlier. Our baby's diagnosis of spina bifida was confirmed a couple of weeks ago and since then my husband and I have been doing as much research as possible. This forum was one of the first things we came upon and I very much appreciate all the information and support offered here on this site.
I've been reading "Living with Spina Bifida", as well as "Children with Spina Bifida: A Parents' Guide". The latter is really good because it is very easy to read, has real-life stories, pictures, and impressions of parents and kids, and it has lots of photos; also, it has lots of information on resources. Needless to say, it was very hard for us discovering this defect, but being more informed has helped us to move forward. Along with the research, we've been able to connect with two moms, both with daughters with spina bifida, right in our rural little town, so I'm getting additional support and info talking with them.
Here's what we can tell you about Baby: he's our 4th boy (we hope one of these days we'll get some girls) and he's about 6 and a half months along. From the level II ultrasound, we could see very clearly that his spina bifida is around mid-lumbar and that he has hydrocephalus and club feet. We know that he is not able to move his legs, because they are rather scrawny, but that hasn't kept him from being quite active otherwise. He loves to punch his mommy, grab his legs, and suck his fists, which made me very happy to see. Right now, we are monitoring his hydrocephalus. We hope he can make it full-term, but if there is too much fluid, he'll have too come out sooner to avoid damage to the brain. He was roughly 2 lbs. two weeks ago, and I'm hoping he keeps up the good work keeping up the healthy weight. In any case, we're all focused on being as prepared as possible for Baby's birth and condition and keeping optimistic and healthy.
Our biggest problem, however, is the financial aspect. I am trying to find all resources possible in our case, which unfortunately is without insurance. I've been finally pointed towards SSDI, which people are saying will pay for the baby's medical bills once he arrives. A nurse even mentioned it helping to cover some of the prenatal costs, but we're a little skeptical about that. I would appreciate any information on what help we can get. We are self-employed and do not qualify for other government aid. I'm currently contacting the SS office and will update my progress, as getting concrete information on getting financial help in our case is like pulling teeth.
Our second problem is with the hospitals: we will have to travel 2 hours for the nearest spina bifida clinic. Between our OB, our current hospital (A) where we are getting the ultrasounds, and the hospital (B) with the spina bifida clinic 2 hours away, there is a big communication mess and conflict with who is going to deliver the baby, and thus who is going to keep us in the loop. Fortunately, there is time to sort these things out. I guess I can say the greatest blessing in this case is that we know ahead of time what to expect and we can do the most we can to help out Baby.
I've been reading "Living with Spina Bifida", as well as "Children with Spina Bifida: A Parents' Guide". The latter is really good because it is very easy to read, has real-life stories, pictures, and impressions of parents and kids, and it has lots of photos; also, it has lots of information on resources. Needless to say, it was very hard for us discovering this defect, but being more informed has helped us to move forward. Along with the research, we've been able to connect with two moms, both with daughters with spina bifida, right in our rural little town, so I'm getting additional support and info talking with them.
Here's what we can tell you about Baby: he's our 4th boy (we hope one of these days we'll get some girls) and he's about 6 and a half months along. From the level II ultrasound, we could see very clearly that his spina bifida is around mid-lumbar and that he has hydrocephalus and club feet. We know that he is not able to move his legs, because they are rather scrawny, but that hasn't kept him from being quite active otherwise. He loves to punch his mommy, grab his legs, and suck his fists, which made me very happy to see. Right now, we are monitoring his hydrocephalus. We hope he can make it full-term, but if there is too much fluid, he'll have too come out sooner to avoid damage to the brain. He was roughly 2 lbs. two weeks ago, and I'm hoping he keeps up the good work keeping up the healthy weight. In any case, we're all focused on being as prepared as possible for Baby's birth and condition and keeping optimistic and healthy.
Our biggest problem, however, is the financial aspect. I am trying to find all resources possible in our case, which unfortunately is without insurance. I've been finally pointed towards SSDI, which people are saying will pay for the baby's medical bills once he arrives. A nurse even mentioned it helping to cover some of the prenatal costs, but we're a little skeptical about that. I would appreciate any information on what help we can get. We are self-employed and do not qualify for other government aid. I'm currently contacting the SS office and will update my progress, as getting concrete information on getting financial help in our case is like pulling teeth.
Our second problem is with the hospitals: we will have to travel 2 hours for the nearest spina bifida clinic. Between our OB, our current hospital (A) where we are getting the ultrasounds, and the hospital (B) with the spina bifida clinic 2 hours away, there is a big communication mess and conflict with who is going to deliver the baby, and thus who is going to keep us in the loop. Fortunately, there is time to sort these things out. I guess I can say the greatest blessing in this case is that we know ahead of time what to expect and we can do the most we can to help out Baby.