So, I'm kind of mad at God

ChristinS · October 2009

There is one kid on my side of the family. My brother's baby is 4 months and I love her so so much. And we noticed a few weeks back that one of her legs looked larger than the other. She was just diagnosed with this rare birth defect called "hemihypertropy". It basically means the baby is growing faster on one side of the body. Meaning her right leg is larger and longer than her left leg. My brother called tonight to talk to me about our family's health history. They have genetic counseling tomorrow. Apparently this issue can sometimes be genetic. He said that they're fairly sure they've notice a difference in her arms/hands. This kills me. Kids with this disorder are much more likely to develop certain types of cancer, as their cells are basically developing abnormally on one side. And walking will be painful on her hips and back. I know it could be worse. She's still healthy and whatnot. But I'm irrationally angry at God/the universe/chance. Whatever. I'm angry. And I just want to vent. GRRRRRRRRR.

tarafire · October 2009

Still that is hard to deal with. I am sorry your family is going through this. I've never heard about this before. Will they give her some sort of steroid for this?

ChristinS · October 2009

All I know right now is that they will do a ultrasound ever 3 months until she is 12. They have to monitor her organs really closely for this special type of tumor that is often associated with hemi.

tarafire · October 2009

Luckily they caught it pretty early so if anything is wrong they're able to stop it.

notquiteblushing · October 2009

I'm sorry Christin. I don't know what to say, that's really sad. I hope since they detected it early they can know what to expect/treat it better.

_Fenton · October 2009

Poor muffin.I imagine this will potentially impact your own babymaking.

ChristinS · October 2009

I don't really know Fenton. It can be genetic. It can be random. But it does freak me out. Mostly for my neice though, because it's so random. But for us, yeah, it enters my mind for sure.

FallinAgain · October 2009

I'm sorry.

CaliopeSpidrman · October 2009

Your poor niece.

It sounds like this sort of thing goes on for years, so at least there's hope that they'll find some sort of cure or treatment in the future for her.

noisy_penguin · October 2009

I'm sorry Christin. =(

ftnups · October 2009

Oh man I am so sorry christin. I know what you mean, things like this are so senseless.

I'm sorry if this was already asked but what can they do for her for now? Are there drugs or therapy that can help?

salimoo · October 2009

I'm sorry, my beautiful Bugle.

audreyhorne · October 2009

I'm so sorry Christin. Even though it's rare, it sounds like the doctors have a good idea how to treat/deal with it.

ootmother2 · October 2009

I'm so sorry Christin. Keep up hoping that a way to fix her will come along soon! Check everywhere, Mayo Clinic, BringhamWomens, etc. You and your family can do something with reasearch and bringing the doctors new ideas.I'll say a prayer for her tonight.

EvilleLady · October 2009

My daughter was a regular at St. Judes and one of her best friends had this disease it was caused by a Wilms tumor located in her kidney. They removed the tumor and she received chemo and radiation and is now in remission. The hemihypertrophy only effected her leg, thigh and arm and since she has been growing it is barely even noticeable. I hope she has the same luck as little Elizabeth did. I wish your family the best of luck. Just stay strong, you all will get through this.

HappyTummy613 · October 2009

I'm so sorry, Christin. I can understand how you'd feel not only scared but angry. But I bet her parents (and awesome aunt) will do everything they can to make sure this doesn't hold her back day-to-day, until there is a cure/treatment for her.

VickiSept2006 · October 2009

I'm so sorry Christin.

Knottie_22382080 · October 2009

I am so sorry Christin. HUGZ. I wish I could help.

KristenBtobe · October 2009

I'm sorry, Christin.

mashedpotato · October 2009

I'm so sorry Christin, I hope they find an easy treatment for her.

Novemberrocks · October 2009

Christin, I'm sorry that your family has to go through this. I totally get the angry at God/Universe thing. So much of what happens in life is random and it's just so hard when the bad stuff happens to good people. I agree that it's great they caught it early, and I'm sure the doctors will be doing everything they can to treat the disorder. I think the blessing in all of this is that she's been born into a loving and supportive family, whose members will do everything in their power to make sure she's okay.

BobLoblaw · October 2009

Oh, poor little peanut! I really hope she's ok.

Kamikaze3 · October 2009

I am sorry too Christin. Like everyone said, at least they know what the problem is and know what to do/expect so hopefully that will help. It is heartbreaking, I am sorry you have to deal with this.

ChristinS · October 2009

Thanks guys. I know things could be a lot worse and I try to remember that. I just had a long conversation with my brother last night about it and I was just feeling so freaking pissed off that they were dealing with it. I had to get it out somewhere.

SarahBethBR · October 2009

I'm so sorry Christin. Technology is improving so quickly now, hopefully it won't be long before they can find a cure.

ChristinS · October 2009

Some of what bugs me is just the idea of her being teased by other kids in school, or not being able to participate in sports if she wants to. You just don't want her to be held back in any way in life.

lindsayll · October 2009

So unfair. I hope the genetic counselors are able to provide some optimism today.

CaliopeSpidrman · October 2009

You never know -- she may not let it hold her back one bit. I think if she gets a healthy sense of self instilled in her from the start, she can really thrive. Kids tease each other regardless of if there's anything wrong with them, but I don't blame you for getting your hackles up just thinking about it. When I was a freshman, I had a girl on my volleyball team who was legally blind. She was terrible and couldn't see the ball until it was about to hit her in the face, but she didn't let that stop her. She wanted to be on a team, so she went for it.

SarahBethBR · October 2009

Cali is totally right. My cousin had a sever brain injury at birth and had a chunk of her brain removed. The doctors told us she would have trouble walking and may not ever develop the fine motor skills most people have. She was never a star athlete or a fine musician, but she was on the soccer team and in the band. She definitely got teased as a kid but she got over it. You just have to have a different definition of success. For her, a stellar report card was no D's and one or two C's. Excellence in soccer was getting on the field. She's a great girl and we're all incredibly proud of where she is now.

Meegs10.13.06 · October 2009

I'm sorry Christin... what a weird, random, crappy thing to have to deal with. Hopefully since they realized early, and with all the monitoring she'll have because of that, any other problems can be quickly dealt with. I would be angry/frustrated too in your situation.

melissainabq · October 2009

I'm sorry Christin. I agree with OOT - do your own research and maybe there's a clinical trial or study out there that she can qualify for to help with treatment.

So, I'm kind of mad at God

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