Just wanted to echo how absolutely wonderful CHOP is. I had a cousin with severe spina bifida, and my Aunt still talks about the care he received there.
I know this is scary and I am so sorry! A mom from my BMB (though she isn't active anymore) has a daughter that has both SB and I think the hydrocephalus. She has a blog called Ernie Bufflo (erniebufflo.com) and she is very sweet and I am sure would be very willing to talk to you. From what I can tell via IG her daughter is absolutely thriving and perfect! Big hugs!
This blog has brought me so much hope. I'll keep reading the other blogs too. Thank you everyone.
I am so glad. If you decide you want to reach out to her, she would be a great support. She is very down to earth and really helpful Hang in there!
Post by floridakat on Mar 18, 2015 22:06:40 GMT -5
Im sorry I can't offer information, but I can offer good thoughts for a positive outcome for your little bit. I wish you strength and peace in the coming months.
My friend from childhood has a beautiful nephew now that had the same surgery at the same hospital you will be going to. Please PM me if you'd like the link to the FB page they set up to follow their surgery and how he's doing now. They're quite religious, so I don't know if that would turn you off at all but they're a wonderful family and I'm sure would welcome any questions.
Post by nonsensetomfoolery on Mar 18, 2015 22:21:39 GMT -5
((Hugs)) I've worked with lots of kids with SB. I haven't stayed in touch with all of their families, but the ones that I have are doing so well! They all have varied outcomes, but they have a great quality of life and are well-loved members of their communities.
And, I learned just this past week thst John Mellencamp has SB and had surgery as an infant. He's doing pretty well as an adult w/SB. : )
Post by ilikedonuts on Mar 18, 2015 22:26:55 GMT -5
One of the girls in my BMB has a daughter with SB and I'm pretty sure she had a surgery when she was 25 weeks pregnant. Her daughter is 3.5 now. I can message her if you like and see if its okay to pass along her info.
One of my best friends has spina bifada, and so does another friend. I know more about my best friend.
He was born with his spine outside his body and fluid on the brain. They told his parents he would never walk or live a normal life. He does both. He walks with an almost normal gait without assistance, has almost finished college, has a job, dates... he has a pretty normal life. He has had a lot of surgeries, the majority of them for shunts, but it's been a while since the last one.
My other friend is in a wheelchair, but she also lives a pretty normal life.
The thing to remember is that my close friend was born more than 20 years ago, and my other friend more than 30. There are so many more treatment options now, and prognosis is quite a bit better.
Hugs. I hope your doctors appointments go well. I'm so sorry you got difficult news.
I'll be praying for you and your LO. I think it's utterly amazing what modern medicine can do nowadays. Best wishes for a good prognosis and an even better outcome!
@carmia - CHOP has a great spina bifida clinic where all the different specialists get together and come up with a plan. Also look into the Ronald McDonald House. They accommodate families of patients while their loved one is hospitalized.
I am so sorry you are going through this, it sounds like you've had a rough go of it.
I have no experience with SB, but I did want to offer some advice about chat boards related to medical conditions in general.
My DH was diagnosed with a degenerative medical condition about 3 weeks after we were married. I went on chat boards specific to his condition to learn everything I could. The initial treatment was brutal. One day, I was on a board and lamenting about how awful the condition seemed for everyone and wondering if this was all we had to look forward to. A very kind older woman who had been dealing with the condition for a while gave me some good honest advice. She told me that while medical related chat boards are a huge source of expertise, by their very nature, they are quite depressing. She pointed out that the reason they were all commiserating is because their medical conditions were not well managed or in a state of remission at the moment. She told me that there are many many examples of people with well managed disease states but those people are out living their lives, not griping on a board.
I have found this to be very true. When DH is in good shape, I rarely think about his medical condition. It really is only when he has a flare-up that I go back to the boards for advice. So if you find an online support group for SB, use the tremendous amount of expertise offered by your group but don't lose hope because everyone there seems to be so ill. Medical boards tend to be a sampling of the worst of the worst case scenarios and there are plenty more good outcomes that may not be represented.
4speedy that's a good way to look at it. I have Crohn's disease myself, so I've been in those sad message boards. I'm trying to stay positive, so thanks for the reminder.
And thank you, everyone, for thinking of me & my family. I know I'm not well-known, so your thoughts mean even more to me. It warms my heart to see so many kind souls in one place.
So many hugs for you. caramia if you decide to deliver in Denver please let me know, I am very close to either hospital you'd deliver at and am very familiar with the NICUs at both and would be more than happy to let you stay with us or host your family or whatever.
So many hugs for you. caramia if you decide to deliver in Denver please let me know, I am very close to either hospital you'd deliver at and am very familiar with the NICUs at both and would be more than happy to let you stay with us or host your family or whatever.
You're so sweet! I will definitely be in touch if we end up in Denver. Thank you so much!