Hi all. So much to talk about today, but what to focus on? First off, I'll mention that my article is now published over at Audacity Magazine. I've gotten some good feedback on it already. As the writer, I can see some flaws with the technical aspect of it that I wish I had caught before submitting, but as a whole I'm pleased. I encourage you to take a look at what I wrote, then post a comment or two at the on-line forum/Parenting Corner over at Audacity. Anxious to read what you think about it!
Secondly, I wanted to tell you all about a new blogger I've found in my searches for others dealing with spina bifida. Her name is Bee and I happened upon her site last week. She and her husband have been dealing with infertility issues for some time now and she has had a number of miscarriages. Deciding to "give up her own biology" for the better of the baby, Bee and her husband decided to go the route of a donor egg. And back in April her wish came true - she was pregnant! Cut to just last week (now at 19 weeks along) when she went for her Level II ultrasound. Her secret wish of having a baby girl was confirmed. But her ultimate wish of having a baby that is "just healthy" was not. Bee found out that her little one has spina bifida.
The baby's level of SB is L4 - just higher than mine at L5/S1. And she's showing signs of hydrocephalus. She has mylomenigocele, as I do - the worst type of SB you can have. Obviously, Bee's head is whirling. How can this be when she gave up her own (presumably) "faulty" genes in order to have a baby with all the "right" parts? It just seems impossible to think that a disabled baby could result from a donor egg. But here she is, living that reality.
At first notice, the doctors painted a very gloomy picture. Possibly her child could walk, but the hydrocephalus - in this baby's case, a form of Arnold Chiari Malformation - could be a larger problem and even cause mental retardation. But by now Bee has had further testing and has gotten some amount of good news in all this chaos. The hydrocephalus is mild and the baby's brain development is normal. Also, the spinal cord is not tethered, which, if it was, would cause further damage by not being able to grow along with the baby (as it is caught up/"stuck" at the site of disability). So it seems like little baby Bee is already a fighter - just like most of the SB kids I've ever known.
The one thing that Bee wants more than anything is to have prenatal surgery for her little girl, so that things that can be "fixed" now can be fixed. Surgery won't reverse or take away SB, but it can halt further damage. Trouble is, this surgery is not considered elective anymore and, in fact, you have to be accepted into a study in order to have it. The study is only looking for healthy, "average" women to participate and Bee does not think she would qualify. She is a slightly older mom-to-be, as she is in her 40's. She also has placenta previa (where the placenta covers the cervix), which in most cases automatically excludes a woman from the study. She has since found out that her placenta previa is only partial, which typically completely corrects itself by the time the baby is due. But still, it seems like it may be a sticking point for getting into the study. Please, if you have any extra prayers floating around your house, give them to Bee, her husband, and little girl. I've only just "met" them, but I know they are kind, loving people who really deserve this opportunity to improve their daughter's life anyway they can.
I've been in contact with Bee since reading about her baby. I posted a comment on her board and told her to email me if she'd like. We've emailed back and forth a few times and I think I've been able to alleviate some of her fears for her daughter's future. Like I said, SB kids are fighters and have just as much gusto and life in them as any other kids out there! As a child I wasn't "allowed" to run, but I did anyway - breaking through many a pair of braces in doing so. Metal braces, mind you. My parents were/are great and always let me try almost anything I liked. From roller skating, to bike riding and so much more, I was never held back in pursuing my dreams - no matter how big or little. I found out for myself that some things weren't possible for me (like roller skating and bike riding), but at least I was given the opportunity to find out on my own.
I've linked to Bee's site over on my sidebar, under "Raising SB Kids". I have become so interested in her story and thought that you, my faithful readers, would be interested as well. Click on over, leave her an encouraging comment, and help her, her husband and little girl get through this difficult time. They will do just fine, I'm sure - but I know they'd love to hear from anyone who can leave a kind word and helpful advice.
(And Bee, if you're reading this and see that I've written some misinformation about your situation, please feel free to go to my message board - the pen icon in my sidebar right under my name - and post a correction. As I've told you, I don't know much about Arnold Chiari Malformation, and I may have misinterpreted some other parts of your story. Please, correct me where I need it. Take care!)
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