Not sure what to do (super long sorry) UPDATED

OMGTree

update: We went to the doctor and her ped said given all her health issues, being on a plane for that long would be extremely dangerous to her health and she would be super high risk of getting something serious that would put her in the hospital. So we are not going to Boston until March.

DD is 8 weeks old 38 weeks and 5 days gestational she was born at 30 weeks 3 days and spent 54 days in the NICU. I have a rare genetic syndrome (1 in 200,000 get it) called Rieger syndrome. DH and I knew that there would be a 50% chance that I would pass it on to DD. The severity of what problems you can have very greatly from person to person with no way of knowing how severe it's going to be. As it turns out DD has it. We found out yesterday at her eye doctor follow up that she has the glaucoma that goes with Rieger's. It's extremely aggressive with half of Rieger's patients with it going blind. Thankfully we have caught it early and she is currently on eye drops to help lower her high eye pressure. On Dec. 3rd they are going to put her under and do a more thorough eye exam and recheck her pressures. If they are still high she will have to have eye surgery. Most drops are a very short term solution for Rieger's patients and Dr. pretty much said she will need surgery but hopefully we can keep it under control till she is older.Here is the problem. My sister and her 5yo son both have Rieger's as well. My nephew has glaucoma in one eye and had surgery at 2yo. They fly accross country every 3 months so he can see a world renown specialist in ped's glaucoma and has delt with many many cases of Rieger's, people fly from all around the globe to have him look at their kids. The Dr. who saw DD is good but even he has called this other Dr. My sister has offered to let me use her companion ticket and share a hotel room in late Nov. to take DD to this specialist to be seen. Here's the problem, my H is against it. He worries about DD being on a plane, being exposed to gross people. My sister, nephew and I will get a row on the plane and I will get the window seat so she won't be next to a stranger. My H feels the trip is a waste of time and DD is just going to get sick. I'm torn. I want her to be seen by this specialist even if he completely agrees with the other Dr's treatment plan. However I'm also worried about exposing her. I guess I'm just not sure if it's worth the risk or not of taking DD on a plane. What do you think?
Sorry this is so stupid long.

MrsRKJ

If it were me, I'd take her.  I mean, it's not like you and your sister are going on a vacation.  You're going to see a specialist in regard to your child's health.  I'd want to explore every possible avenue (and get another opinion) when it came to my child's health.  I do understand where your DH is coming from, but I'd just explain that it's what you need to do in order to make sure DD is getting the best possible care for her situation.  Maybe have him talk to the pedi to ease his mind about airborne germs?

I think it's worth the risk.  Talk to your pedi first though.

Good luck!

DrRx

I agree with @MrsRKJ--I would talk to your pedi first, but I think that it would be worth the risk.  Make sure to wear her if possible, and make sure to sanitize your hands after you touch surfaces before touching her.  Try to pick a flight time where there aren't as many people at the airport/security and hopefully the risk will be lower.  Good luck!

Courtneyw04

I would not risk it at that age. We flew with our kids in the summer when they were one and all four ended up sick and one ended up in the hospital because the coughing was so bad. Definitely talk to your Ped about it.

brachysira

Yes, you could let your doctor make the call.  If you go, do what you can with vacs and synagis and then wear or cover the whole stroller/carseat with a blanket.  Either way, don't feel guilty.  Neither choice is going to be wrong. 

OMGTree

We would leave Nov. 21st and from here to Boston there is only like 1 flight, unlike Vegas where there is a flight every hour. We would fly out at like 7:15am. She has already had 3 out of 5 of her vacs and she will get her synagis before we leave. I have wipes that are designed to clean surfaces that come in contact with babies so I would bring those and wipe down the armrests and flip down table. I don't have a wrap but if we end up going I would buy a moby or something similar and wear her. I will be taking her carseat and stroller and she will be completely covered while in those. We see the ped on thur and my H is going we decided rather then one of us feeling upset/guilty we would talk to her and let her decided so we both feel good about it.

Throw3ks

@omgtree this is a tough call. What do you see the specialist saying that your doctor didn't? but if the docs have discussed the case then I don't think its worth the travel. However, I am like you and would do any and everything I could for my LO. I am sorry your in this position. I do think it would make you upset if you knew you had a chance to see this doctor and didn't do it. Goodluck with your choice.

PhillyGal34

Maybe I missed this but have you been assured that the specialist will be able to see you/insurance will cover it?

I would probably go but I would buy a separate seat for the baby for the car seat (holding a baby on a plane is not recommended by any airlines because it is not considered to be safe for the baby or other passengers... also, checking a car seat makes it unsafe to use because it can be tossed around during luggage handling and the flight which is the equivalent to an accident so the car seat should be tossed) which would allow you to put a cover over the carrier to hopefully keep the baby shielded from germs.


Whether you go or not you are making the right choice.  there is no wrong choice, you are doing the best thing you can to protect your child either way.  best of luck

OMGTree

Yes the specialist can see us. He knows the family and knows we are flying across country so he makes sure to reserve a time slot even if it's after hours or before he sees other patients. Driving is out of the question. I can't get an extra seat without having to go into another row with strangers. My nephew is 5 and requires his own seat my sister needs her's then I have mine. It 's not that I'm expecting him to say something different I just want to make sure he agrees with the other doctor's findings and plan of action. The two doctors have not discussed her case and the specialist in Boston would want to exam her himself. We have had bad experiences in the past with eye doctors trying to sign my nephew up for surgeries that, as it turns out, weren't nessasary or the right ones for a Rieger patient. Baby girl already had her flu shot they gave it to her in the NICU. We are going to check her car seat at the gate so it's not with the luggage.

OMGTree

I could wait until spring but by then it might be to late. She is going under anesthesia Dec. 3rd for her eye exam and if her pressure is still high they are going to do surgery right away. They have to act fast with her glaucoma because it can make her blind very quickly.