Have to make a (somewhat) tough decision

Re: Have to make a (somewhat) tough decision

• Ash2015 member

  April 2014

  fredalina said:

  Just a question: What kind of study is this? Is it possible you would get in and then not get the study treatment, or get a different study treatment?

  If he gets into the study, he's guaranteed to get the treatment. Some of the kids gets it at the beginning and some get a placebo, but the ones who get the placebo will get the actual treatment towards the end of the study.

  

  
  

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• Ash2015 member

  April 2014

  -auntie- said:

  That is a tough one.

  
  

  I would think if it does work and becomes a standard tx, you would be able to have a sibling on your timeline and benefit from the study without being rushed.

  That's part of it that we've been debating. The only thing is, if it becomes an standard treatment, chances are it would be waaay too expensive for us to pay for and this study is completely free (barring travel expenses). They're also only testing on really young kids, so he might be too old by the time it becomes standard. 

  

  
  

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• Ash2015 member

  April 2014

  It's kids ages 12 months to 6 years.

  

  
  

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• ToastieSimons member

  April 2014

  Spooko said:

  Obviously you have to do what's best for your family, but I don't think a child should be born "with a job." That is to say, I don't think the purpose of having a child should be to fulfill some other kind of goal if you aren't even in a place where you want and are ready for a child. I wouldn't change my timeline on a what-if like this. Do you even know if you're going to be accepted for sure?

  I know what it feels like to be driven to do anything and everything to help my kid. But the child you would be having deserves to have that much, too, and if you aren't really wanting that child for itself at this point, it's unfair.

  I'm not sure how harshly this comes across in writing so hopefully you can trust that I mean this in the absolutely kindest way possible.

  I kind of agree with this.  I understand the "want" the "need" and the "what if".  But then look at it from the other perspective, what if it does NOTHING?  Will you feel overwhelmed with 2 children and your 1st child's needs?  What if this child is born with special needs or some other issue that leaves you unable to use his/her cord blood?

  
  

  In the world of special needs there are going to be a million things that could turn your child's life around.  It's about balance and figuring out which ones are worth it and which ones you have to pass over.

  
  

  And what if the cord blood works?  What if they need more from this child in the future?  Would you end it at the cord blood or would continue to press child 2 to donate to child 1?  Do you feel that as they grow up child 2 will feel like yoiu only wanted them to try and fix child 1?

  
  

  I think the only reason you should have child 2 is because you want another baby.  You want newborn snuggles, witching hours, dirty diapers, cries, giggles and the whole gamut.  Not because you feel rushed into getting your son into a study that has a small chance of doing something.  

  
  

  This will be a hard decision for you to make but you need to think about child 2 and their life in addition to child 1.

  
  

  To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
  

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• Ash2015 member

  April 2014

  I totally agree with both of you. That's one part that I'm pretty torn about. I definitely want to have another kid some time in the near future, so this would just be bumping up the time line a year or two. SO and I have considered the "what-ifs" about having another SN child and we're prepared to deal with that, definitely. The more I think about it, the more I get excited about just having another LO around. I don't think you guys are being harsh at all and it's good for me to hear this kind of stuff, honestly. My grandma asked if I would have any regrets about having another baby so soon if the treatment didn't work, and I can honestly say that I wouldn't. IF (a big if) DS does get accepted into this study (we would be able to find out before getting pregnant), I wouldn't have another child just to participate in this study. That's part of why we're talking about it so early. I don't want to have to tell a kid, "hey, we only had you to fix DS but I guess you're here to stay now". YKWIM?
  

  

  
  

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• st.augbride member

  April 2014

  If you know for sure that you want another baby, then I think I'd go for it if I were you and you feel you could handle it should you get pregnant right away. I know where your thinking is at. When dd was diagnosed with severe to profound hearing loss, I found studies using cord blood to treat the hearing loss (still ongoing now, but patients are being enrolled), though we never banked her cord blood. My mind immediately went to 'what if we have another and bank theirs'. But, for us, dd actually was our second SN kid, so we had absolutely no intentions of having a third. Heck, even if dd wasn't also SN, a third was not in the plan. So ultimately, it would not have been right for our family. I also am not convinced it would help her particular hearing loss. But in your shoes, knowing you do want a second and this has strong potential to benefit your CP LO, I do think I'd up the timeline to enroll in the study. But, that also assumes that you guys are fully able to handle it moneywise, timewise, and that you'll be able to travel to the study site with TWO LOs in tow.

  

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• Assembly_Reqd member

  April 2014

  Some big assumptions you are making are that the cord blood will be properly collected, your state actually has a collection program(i.e. your birth hospital collects blood) AND the cord blood will have enough cells in it to be useful. There is no guarantee on any of these.
  
  I am not being negative about your choice, just letting you know about some other things to consider.
  

  WAY 2 Cool 4 School
  

  
  

  
  

  

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• CCinLove member

  April 2014

  Assuming that I KNEW I wanted another child and was certain we'd be able to participate in the study, I would probably move up the TTC timeline to participate.  I would have too many regrets if the study found that the treatment was effective, but then we couldn't afford to pay for it out of pocket.  I would do almost ANYTHING to help my own son live his best life, and having 2 children closer together than I'd planned doesn't seem like the worst thing.  DH and I have planned TTC around all kinds of less important things.  I have no idea if this is a good idea or not, but I'm just being honest about what I would probably do.

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• Ash2015 member

  April 2014

  Thanks for all of your responses! It's been really helpful hearing from people on both sides and you ladies have mentioned some stuff I hadn't even thought of. We still haven't made a concrete decision, but I think taking all of this into account when we do make our decision will make both SO and I feel better about it.

  

  
  

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