Incidence of needing a trach

[janjanwhit]

I have just been told by a mother of a boy with sb that it is not unusual for patients with sb to require traching. Her son has a trach and ventilator. I had never heard of this occuring before. He has a trach because the chiari causes the throat muscles to be weak, not allowing him to breathe properly unaided. Is this commen?

[Dodger67]

That sounds like a really severe case of chiari - which in itself is not all that common.
I've actually never heard of such a case.

BTW please invite the mother (and boy if he's able) to join us here.

[smoop]

NO... it's not common. I have only heard of a few cases where the child needed a trach. So while it's definitely a possibility there's absolutely no need to worry about it.

[janjanwhit]

Thats what i thought. I thought it sounded like it would be quite a severe case and not very commen. more like a worse case senario. I suppose its good to know of all the possible outcomes.

[cutie patooties mom]

Gabi had a trach from 3 months old until 18 months old because of her chiari. But.....we have met a lot of people with spina bifida in the last 11 1/2 years and I have only met one other child with spina bifida AND a trach. I would say it's very uncommon.

[janjanwhit]

Thanks for replying. I am trying to learn all i can so I can cope better when it does. I like to know the possibiliy of different things happening. I find knowledge comforting.

[LisaJoy]

You're going to do great! You've come a long way since you introduced yourself to us.

[dahliafaolan]

In all the kids I've met with Spina Bifida, I don't think I've ever heard of one having a trach from anything regarding the Spina Bifida. I've heard of it coming about as a complication from another condition, but not the Spina Bifida.

[janjanwhit]

I think I will do ok. I still have days where i freak out and worry that i made the wrong decision in keeping my baby. Its just very hard not knowing. Every know and then i hear about a particularly bad case of sb and get worried. I cant wait to give birth so I will know what we are dealing with.

[LisaJoy]

we'll be right here with you all the way

[smoop]

Probably the best advice I got when I was pregnant- by my neurosurgeon who also has SB- was to stay away from the internet during my pregnancy. She was very positive (for obvious reasons) and simply told me that we wouldn't know all the details until my daughter was born. Trust me, this was really hard for me because I am an internet junkie!

I read and understood the basics of SB during my pregnancy and that was about it. I think that's what got me through the rest of my pregnancy (that and my faith). I will tell you-- you are going to be holding your child before long and you will be in awe of this little creation. I look at Analise now and thank God for who she is. It took me a while to look past the disability and see her as a person. I was so focused on her future during her first year of life but have learned how silly I was being. The future is uncertain for each of us-- disability or not.

I realize that I have a huge responsibility in teaching this little girl that she has great worth, teaching her to find her independence, and helping her discover what her gifts and talents are. Life is going to be difficult for her but that doesn't mean her life can't be totally fulfilling. Hang in there.. it won't be long until you are holding your precious one!

[Dodger67]

We're here for you.
Please try to stop torturing yourself by seeking out all the worst possible scenarios.
The simple truth is that your baby will most likely be quite healthy and have minimal complications - thats the way it is for most babies with SB.
Even if the kid does end up needing a tracheostomy that is still far from being the end of the world as we know it.
For your own sake and also for your baby, you have got to try to relax.

[LisaJoy]

smoop - you are an awesome mom!

[janjanwhit]

I think using the internet has helped me a lot. If I hadnt have I would have had a termination. The doctors only told me the very worse senario and that its likely to happen. I didnt know that there is so much hope. I have learnt from babies measurements that he is actually doing very well. I think I am a bit morbid wanting to know the worse case senarios as well. The reason I do that is so I dont go into shock. I have bipolar disorder. I dont want to spark off depression. I have to be there for my baby as much as possible. I know that I will be the most important person to him. I figure that if the worst happens I will be prepared and more able to cope. More likely is that it wont happen and then I will be really happy. Being happy will have a positive effect on my parenting and ability to bond with my baby. I had a hard time with my first child and he has no medical problems. I wouldnt want to put this baby through that.

[Dodger67]

Now I understand your motivation.:sign0021:

My girlfriend also has bipolar disorder.

[LisaJoy]

Your two sons are lucky to have a mom who is so caring.

[janjanwhit]

I just figure that this baby has enough problems without having a mental mother too lol. I am trying my best to prepare myself. Sometimes getting a shock can set off an episode. Although I have been fine so far, and this was quite shocking!! I am manipulating everything that i can to be in my favour so I can give this baby the best chance.

[Dodger67]

I am all too familiar with the kind of "trivial" things that can trigger either a depression episode or even a huge tantrum - those are very scary! However K has been remarkably stable over the last year or so.

[janjanwhit]

I have been unmedicated for over a year and my moods stable. I have only been manic a few times and sleeping pills pretty much fixed that. I am amazed that under this massive amount of stress I haven't cracked. Its really unusual. I am a bit worried its the calm before the storm.
I think I am transferring this stress into other forms. Been getting really wound up about the dogs next door pooping on my lawn and the grocery store charging me full price for ice cream that was suppose to be on special. I dont think I normally care that much about those things.