First trip with a child with heart defects, no spleen

[tbelfonti]

Hi All!

We're travelling to WDW May 13 - 20th with our DDs, Maddie Rose(4.5 yrs old) and Olivia (8.5 months old). Olivia has heart defects and has no spleen.

A little background:

DH and I are WDW fanatics. We don't vacation anywhere else ... We may consider a different vacation destination but when it comes down to it, we figure that we can spend a little more and go to WDW.

Despite having two open heart surgeries and a stomach procedure in her short time on earth, Olivia is developmentally on track and doing amazingly well. Her doctors call her a poster child and a star. However with her heart issues and especially the lack of spleen we have to be very careful about germs.

So my question:

I know there is a pass (?) - would you think that we would "qualify" for one? should we get one? What would I need to bring along with me in order to obtain one? Or do you think we'll be fine?

We are antibacterial hand lotion fans and keep the stuff with us at all times, wiping down everything Olivia may touch when we are out and using it on ourselves after shaking hands with someone or touching anything before we touch her.

I would love to hear from any other family that has done Disney with a heart child. And I would love any and all suggestions you may have for us!

My personal goal since we found out about Olivia's defects at 20 weeks pregnancy was to get her well enough to get her to Disney World. I know this trip is going to be extremely emotional for myself and my DH.

I realize that there are others with more complex issues than what we face and I don't want to abuse Disney by taking a pass that we do not need. We feel blessed that Olivia has done so well thus far. So if you feel we can get by without one, I would appreciate your input

 

[karynnix]

The Guest Assistance pass would definately benefit you. You can bypass standing in line and go in through the fast pass. My son is autistic, and all I had to do was get a note from his doctor to present for the pass. You can take up to 6 people through with the GAC. Have a wonderful trip!!

 

[roseprincess]

tbelfonti,
God bless you, your dd Olivia, and the rest of your family.

I pretty much know what you have gone thru with a child with a heart condition, congenital heart defects. My dd Chrissy, she just turned 8yrs. old, was born with a complex congenital heart defect (Truncus Arteriosis). She had 2 open heart surgeries by the time she was 3 months old. Her 3rd open heart surgery was when she was 18 months old. After her 1st heart surgery at 5 weeks of age, she ended up with a Staph (bacteria) infection and an abcess very close to her heart during her hospitalization. She was very critical at the time. She pulled thru with high doses of IV antibiotics for 2 months in the PICU and the Ped. heart surgeon had to go back in and remove the abcess when they found the infection. It was a very scary time for dh and I. I also was taking care of my dd's twin brother at home. God sure did pull my dd thru all this.
Now my dd has been very stable medically for a few yrs.

As of WDW, I would definately get the GAC card. If you need to, bring some kind of script from her doctor or some kind of documentation.
The CMs at Guest Services don't need to see the documentation, but you never know. Also bringing that antibacterial stuff for her is a great idea.

My dd and ds have only been to WDW once, last June for my dd's Make-A-Wish trip. It was awesome! We also used the GAC when we went.

If you have any questions or want to chat about heart defects, etc. you can PM me.

Have a great trip!


Rosemarie

 

[Anne MN]

My DD jessica was also born with a CHD- tricuspid atresia. we went on her wish trip last sept. we have gone with just her and her twin sister before for a short trip before little sister was born.
Get a GAC- use the stroller- do not go when it is hot and humid (summer) if possible
jessica had a great time, but she rode in the stroller most of the time- it was hot and humid- but would get up and go on the rides. she just turned 10. she is smaller than her twin- jess looks like a 6 yr old- she only weigh's 40 lbs.

if you have any specific questions, you can PM me.

are you a member of TCHIN?

 

[tbelfonti]

Karynnix, Rosemarie, and Anne:

Thank you for your responses!

Olivia basically has hypoplastic right heart - although they don't call it that. She has pulmonary atresia and stenosis, heterotaxy and dextrocardia. She is our miracle child as the doctor who discovered her defect strongly urged us to terminate. It wasn't an option for us and I thank God every day we didn't listen to him.

Olivia has had two heart surgeries and a stomach procedure (gut malrotation and an appendix removal since it was on the right side they didn't want to leave it in and risk her getting an infection and not being able to diagnose it since it's on the wrong side). All her organs are "swapped" - but looking at her - you would NEVER know there's something "wrong" with her. She has big rosy cheeks - perfect for biting

Anne - I am not a member of TCHIN but am a member of Little Hearts. Olivia has a website www.olivia-ann.com

I am glad to hear your girls are doing so well and thanks again for all your advice!

Back On Topic: I am taking Olivia in for her 9 month checkup next week and will ask the doctor to write a note for us to bring with us to Disney. Can I get the GAC card at Guest Services at MK? Do I just need one for the entire trip or do I need to stop in at each park?

Thanks again for all your help!

 

[Talking Hands]

You do not need a note from the doctor to get a GAC. You just need to explain her needs like use stroller as a w/c, wait out of the sun, etc. What will make the trip easier on her. You get it at the first park you visit and it is good for the entire stay.

 

[minkydog]

I don't have a child with heart disease, but my DH has severe cardiomyopathy,CHF,seizures,and lung disease. He has been on high doses of steroids for almost 2yrs, so he has a hard time fighting any infection. He takes 40-50 meds a day. Our WDW strategy has been to go in the off season(DH can't take the heat), lots of hand washing supplemented by hand sanitizer, and staying on-site to facilitate his much needed rest times. We eat at least one sit down meal every day, and they easily accomodate DHs low sodium diet. We get fruit & eggs from the food court for breakfast, or bring our own. When he needs rest, he gets the room to himself while the rest of us find something else to do at the resort (not hard!).
Heart disease has changed our style of touring, but has not eliminated great vacations. It just takes a lot more preparation, but once we're there, ahhhhh...

Cathy--mom to John,18(bipolar),Eleni,12 & Christian the Amazing Wonder Boy,9 (severe MR/autisim)