Wish Trip children with heart defects - doing the big rides?

[HyperPippi]

I have been asking my wish-trip child what he wants to do at Disney, and he keeps coming back with the big rides - Space Mountain, Expedition Everest, and more. Here's the thing - he's got a heart defect HLHS. I see that they say no heart conditions allowed on any of these rides. It's really got me frustrated because it seems like all the big kid rides have them. He's going to be turning 10 on his trip, and he's really disappointed about this. (I am too.)

I even called his cardiologist and the nurse told me they don't want him to do those rides. (She didn't even ask the doctor.) I'm so bummed. Now he's going to either miss out while his YOUNGER brothers get to do them (because they're tall enough for some of them) or we'll have to make them miss those rides (on probably their only trip to Disney ever) in an effort to not make my wish child sad. So someone is going to be crying no matter what. This is not my idea of a dream trip if that is going to be our situation. (His next younger brother is only a couple inches shorter than he is. He is 50" at 9 years old and the 6-year-old is 48 inches.)

What's got me confused is that this is one of the roughest heart defects out there. He's actually doing great for someone with it - with the exception of going deaf and being g-tube dependent. His heart is in very good shape for one of these kids. I've been reading trip reports of other people's visits where their children have HLHS and they DID go on these rides. I don't get it. Did their doctors allow this or did they just not bother to ask? Or did they ignore their doctor's recommendations?

I just don't know what to do. This revelation that he'll be limited to kiddie rides has me almost wanting to cancel the wish trip because it's going to be more stress than it's worth. But I don't want my child to have a heart attack because he wanted to go on Space Mountain either.

What would you do?

 

[lanejudy]

Others may not have asked their doctors

WDW will not stop anyone from riding as long as the person meets any height requirements. The warnings are posted and it is up to the guest to determine risk.

Personally, since you asked your son's doctor -- or the nurse -- and the answer was "no" I would stick to that. You could ask again if you feel it wasn't properly vetted through the physician, though I know most of the NP's at DD's specialists know the answer the doctor will give.

I understand your frustration, but the warnings are there for the passenger's safety. If something were to go wrong with your son's heart due to one of those rides, you'd never be able to forgive yourself. Maybe you can plan something else "special" that he gets to do while others do the rides he can't -- an extra treat or character visit or something.

Enjoy your vacation!

 

[TheRustyScupper]

. . . I just don't know what to do . . . What would you do?

1) Follow the doctor/nurse orders.
2) Better a disappointed child than the alternative.

 

[Coonhound]

Don't let him ride them. It's not worth the risk and you'd never forgive yourself if you allowed it and something bad happened.

I would not, however, make the younger kids skip rides due to him not being able to ride. I wouldn't say have the younger siblings ride *in front of him* because he will be sad he can't ride too, but maybe split up the group and he can find something special to do with one parent while the other parent takes the other kids on the headliner rides. It may not be fair to the older child who cannot ride, but, if this may be their only Disney trip ever, I just couldn't justify not letting the kids ride the big thrill rides. However like I said split the group apart so he doesn't have to actually watch them going on the big rides. I'd be afraid that the healthy kids would have resentment over not getting to do something simply because brother can't, and honestly that's a very common problem with siblings where one is ill and the others are healthy- very often the healthy children grow up with some resentment/jealousy because their whole lives have to be put on hold/changed/less attention due to having an ill sibling. It's sad, because they're just kids and have to always be the generous one because the sibling needs help. And then if anything bad happens to the sibling, they end up feeling guilty over their resentment. So it's a hard situation when you have a sick child with healthy siblings. This is why I wouldn't make the younger kids miss rides just because their brother can't go on them.

Other people may possible ignore their doctors warnings or maybe they don't even ask. But you should follow your doctor, not follow what other people did. They could have been putting their precious children at great risk, and a silly ride just isn't worth it.

 

[aaarcher86]

Your child's health isn't worth a 60 second thrill ride. Please listen to your doctor.

 

[HyperPippi]

How does that work if you try to split up during the wish trip. Does only the group with the wish child get to skip the lines then?

 

[Betty Rohrer]

only ones with wish child get to skip lines, other would need to fast pas + those rides

 

[SmallWorld71]

I have been asking my wish-trip child what he wants to do at Disney, and he keeps coming back with the big rides - Space Mountain, Expedition Everest, and more. Here's the thing - he's got a heart defect HLHS. I see that they say no heart conditions allowed on any of these rides. It's really got me frustrated because it seems like all the big kid rides have them. He's going to be turning 10 on his trip, and he's really disappointed about this. (I am too.)

I even called his cardiologist and the nurse told me they don't want him to do those rides. (She didn't even ask the doctor.) I'm so bummed. Now he's going to either miss out while his YOUNGER brothers get to do them (because they're tall enough for some of them) or we'll have to make them miss those rides (on probably their only trip to Disney ever) in an effort to not make my wish child sad. So someone is going to be crying no matter what. This is not my idea of a dream trip if that is going to be our situation. (His next younger brother is only a couple inches shorter than he is. He is 50" at 9 years old and the 6-year-old is 48 inches.)

What's got me confused is that this is one of the roughest heart defects out there. He's actually doing great for someone with it - with the exception of going deaf and being g-tube dependent. His heart is in very good shape for one of these kids. I've been reading trip reports of other people's visits where their children have HLHS and they DID go on these rides. I don't get it. Did their doctors allow this or did they just not bother to ask? Or did they ignore their doctor's recommendations?

I just don't know what to do. This revelation that he'll be limited to kiddie rides has me almost wanting to cancel the wish trip because it's going to be more stress than it's worth. But I don't want my child to have a heart attack because he wanted to go on Space Mountain either.

What would you do?

I will come right out and say that I don't know anything about heart defects, so I can't offer advice there.
However, I have an 11 year old, and while she does love Space Mountain and Expedition Everest and the like...there is so much more to WDW that she loves that are not fast moving rides. Instead of asking him a general what he wants to do type question - I would start getting him excited about some of the many other things WDW has to offer and see what he wants to do out of those.
For example, there are some really cool rides that are not 'kiddie' like in any way, but move very slowly. A few examples: The Haunted Mansion, Buzz, Spaceship Earth.....
And, then there is are the shows and the entertainment - Fantasmic, Main Street Electrical Parade etc...
And the characters - do not skip out on them because you think he might be too old. The characters had a field day with my kids last year. I think they were thrilled to have older kids in line! In particular, you might want to drag him to meet a few princesses.
The Agent P game in Epcot and the Sorcerers of the Magic Kingdom in MK are great for this age.

We spent full days in the parks last year and if you added up our 'thrill' ride total each day, it probably equaled about 1/2 hour out of our 10 - 12 hour days.

There is so much more to WDW than just a few semi-thrill rides. I truly hope you all find a way to have a good time.

 

[SueM in MN]

I agree with the others. The warnings are out there on those attractions for a reason. No, the CMs won't stop him from riding them, but there is risk to him in riding.
You can always ask the cardiologist again, but the answer is still likely to be no. Most nurses do know what the doctor would answer, so I would expect the answer to be the same.
Your son may be disappointed to not be able to ride those things, but at 10, he's also old enough to understand that just because he could do something doesn't mean it's a wise choice or he should.
And, there will be things (in life, not just at WDW) that he won't be able to do.
He may be disappointed, he may not like it, (and should be allowed to have those feelings) but he still needs to accept it.
If it makes things better, you can use the cardiologist's saying no as your reason - I would be careful not to make the cardiologist a 'bad guy', but just say something like, "I know you're disappointed, but Dr. Xxx is a good doctor and he thinks it is dangerous for you to go on that ride. What can we do instead?"

Those are good life lessons to have - especially as he is coming into being a teenager.

I also agree either the other posters that to make your other kids sit out things they want to do because their brother can't do them is not going to work.
It's likely they will be resentful and angry at their brother for being disabled and at you because you won't let them do something that is OK for them but not him.
That is not a life lesson you don't want them to learn.

I agree with the other posters - use Fastpass Plus to schedule those attractions for the other kids and split up while they are doing them.

Besides some of the other things people pointed out (the entertainment and games), there are things to look for - like hidden Mickeys.
Are there things he is interested in that you can build on ( how things work, design, etc.)?

 

[WheeledTraveler]

Every kid is different. There may be some kids with HLHS whose doctors are okay with their going on the thrill rides.

Also, it's worth looking at the rides that have warnings and separate them out and ask his doctors more specifically. For example, the rollercoasters and big thrill rides are very different from Tomorrowland Speedway and Kilimanjaro Safari (both of which also have warnings about heart problems). You can usually find videos of rides on Youtube and possibly looking at it yourself would give you an idea about rides that might be worth asking the doctors about more specifically. (They may not realize that the restrictions are on listed on more than big rollercoaster-level thrill rides).

No matter what they say, I'd stick with what the doctor says. The last thing you want is a medical emergency in the middle of the trip.

As far as your other kids go, it's probably worth thinking now about where the priorities are. You can split up, but they won't have the MAW pass that your wish kid will. While you may think this is all your kids' one chance to go to WDW, there's no way to really know that. Even if they don't go again as kids (or as young kids) doesn't mean they won't ever go again. I've also seen several MAW families post that their wish trip was supposed to be their only trip ever to WDW, but then have such a good time that they figure out how to scrape together the money to go again eventually.

I'd also suggest really researching and putting more emphasis on the attractions at WDW (and other parks you get tickets to on a wish trip) that aren't thrill rides. There's plenty to do without them. There's also loads to do at GKTW, even for an 11 year old, and you don't have access to most of those experiences outside of on the wish trip. Even if you can't see how you can make another WDW trip work, it's going to be there in the future if it turns out you can, while the GKTW experiences mostly won't be.

 

[bopper]

Since your wish-kid going on the thrill rides is a no -go...I would think there are these choices.

1) Split up---take the wish kid on a different activity (boat ride, nap, ??) on afternoon and take the others on some of the big rides

2) Focus on the wish kid --this is for him...there is plenty for 6 year olds to do otherwise. Now you know that they are big enough, but they don't. You can just tell them that they are not old enough for that ride yet. Look up rides that might interest him like Pirates or Haunted mansion or Jungle Cruise or Lights Motor Action or star warsy stuff.

3) Pick another wish- If your wish-kids wish is to ride the big rides at Disney and he can't...is this the best wish for him?

 

[mttmilner]

My suggestion would be don't tempt it. The nurse at the cardiologist's office didn't need to ask the doctor because she probably knows just as much about the disease process as he does. If you want, call and speak with the cardiologist yourself but be prepared for the same response.

 

[HyperPippi]

His wish is to do Star Wars things. He wants to do Jedi training, but he can't ride ANY of the space rides apparently. He can't do Mission: Space. He can't do Space Mountain, and he can't even do Star Tours - the only Star Wars themed ride in all of WDW. (I haven't told him that one yet.) He wanted to go on a Star Wars weekend, but those are in the heat of the summer and he has trouble when things are 90 degrees and above. I just don't know what to think at this point...

I did contact one of the other wish trippers whose son goes to Boston Children's Hospital and also has HLHS. Her son, at age 5, was allowed to go on all the rides even with HLHS. He was tall enough to do some of those with the heart condition warning and he did them fine. Apparently some cardiologists are more conservative than others. I just don't know what to think. Boston is the #1 rated pediatric cardiology department and that's what they say? Our hospital is like 30 or so but that's mainly because we're not well known (so the "reputation" score is low) and we don't do transplants. It's attached to an adult hospital so they only got included in children's hospital ratings a couple years ago. I just don't know what to think. She said their doctors sat them down and specifically said that there is no increased risk due to his HLHS.

I love our cardiologist, but I'm really struggling with this.

 

[WheeledTraveler]

Do you have an appointment with the cardiologist coming up before the trip? I'd bring it up then. I'd suggest checking YouTube videos of Star Tours specifically to see if they give an idea of the amount of motion and then maybe use your phone or something to show him. Star Tours is definitely on the list of things I would think he might be able to do.

I wouldn't be surprised if different cardiologists at BCH have different opinions on the issue. There's no clear-cut answer. Ultimately, it is your decision as a parent whether you want to let him take the risk or not. WDW doesn't ask people if they have specific conditions. They need to post the warnings so that guests can make informed decisions and, quite honestly, to avoid lawsuits (I think it's actually law). You know your kid better than anyone, even the doctors.

 

[declansdad]

Would you really take the chance with your son's health even after the doctor told you not to do it?

I can understand you not wanting him to be disappointed, but I don't get your struggle with this decision.

 

[bopper]

Can't he do the tame version of Mission Space?

 

[declansdad]

Do you have an appointment with the cardiologist coming up before the trip? I'd bring it up then. I'd suggest checking YouTube videos of Star Tours specifically to see if they give an idea of the amount of motion and then maybe use your phone or something to show him. Star Tours is definitely on the list of things I would think he might be able to do.

I wouldn't be surprised if different cardiologists at BCH have different opinions on the issue. There's no clear-cut answer. Ultimately, it is your decision as a parent whether you want to let him take the risk or not. WDW doesn't ask people if they have specific conditions. They need to post the warnings so that guests can make informed decisions and, quite honestly, to avoid lawsuits (I think it's actually law). You know your kid better than anyone, even the doctors.

I would think the cardiologist would understand the ramifications on her son's health that she would.

 

[SueM in MN]

Can't he do the tame version of Mission Space?

The 'take version' has the same warnings.
The difference is that the tame version doesn't include the centrifuge spinning that the orange version does. Other than that, they are the same.

 

[SMD]

His wish is to do Star Wars things. He wants to do Jedi training, but he can't ride ANY of the space rides apparently. He can't do Mission: Space. He can't do Space Mountain, and he can't even do Star Tours - the only Star Wars themed ride in all of WDW. (I haven't told him that one yet.) He wanted to go on a Star Wars weekend, but those are in the heat of the summer and he has trouble when things are 90 degrees and above. I just don't know what to think at this point...

How set are you on a WDW wish trip? In April 2015 there will be a Star Wars Celebration in Anaheim. It is a big convention, is not during the heat of summer, and doesn't have warnings for heart conditions. Disneyland also has Jedi Training Academy. If it's too late to change the wish, maybe they can arrange to run the Star Tours ride movie without the movements? I think you'd have to go through your coordinator to arrange that pretty far in advance.

 

[HyperPippi]

Actually, this wasn't even what he came into Make-a-wish asking for. We were surprised when he switched to this when they offered. Before his wish meeting (and the reason we'd finally contacted them even though we'd known for years he'd be eligible for a MAW), he wanted to be an actor in Star Wars VII. So that is why we'd finally gone ahead, since that was time dependent. We were hoping to wait until he was older and could make a more mature wish. But he couldn't really explain WHY he wanted to be in Star Wars VII, so they said they'd rather have him do something they know for sure he'd enjoy. (Of course, that was before this.)

So his original wish wasn't even going to be WDW. That's kind of what they talked him into - since they said he could do Jedi training here.

Your suggestion of a Star Wars convention is a good one - if he doesn't want to go back to his original wish. We'll talk about that as an option too. Thanks! It's good to know he could do Jedi Training at Disneyland too if he does do that.