HiI'm posting on here in case anyones come across the same and has an answer.
I have emailed my paediatric heart nurse contact but no reply.
I have a 4 month old with T21 along with a large ASD and mild narrowing if airways.
Shes never had treatment for either, and day to day she's fine the ASD was only discovered due to the T21 diagnosis where the 2 unfortunately go hand in hand, baby was 2 weeks old before murmur was heard. The narrow airway could be due to being 6 weeks premature.
She will have surgery at 4/5 years old to close ASD unless we get lucky and it closes.
I've booked a flight for when she is 6 months, we were told this is safe just carry on as normal, the flights 2.5h so fairly short.
What I would like to ask is, are there any precautions I should take with baby on plane journey, I assume not or else I'd have been advised not to go on a plane with her but I'm double guessing myself now.
Thanks Gemma
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Gemmag1984
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I am sorry to hear about your little girl and her condition fingers crossed it will close up on it's own
Your question I would not like to answer as I feel it does need the professionals to do so even though others may come along and give you suggestions
In the meantime I would keep trying to get hold of her heart nurse sounds like you still have a few weeks to hopefully get them to answer and you could also phone the BHF Nurses who maybe able to also advise you to x
Heart Helpline team on 0300 330 3311 Mon-Fri 9-5pm
Definitely keep trying with your medical team, but the only big precaution I'd advise is making sure you have comprehensive travel insurance and check if you need to inform the airline of anything.
Thank you for the reply.I've taken out travel insurance via Avanti with all issues disclosed and advice sought from their medical team with regards some questions they asked so all sorted there.
I think I ll persist with chasing the nhs heart nurse and if no reply contact the team at BHF.
My main thought was I should inform airline however I'm not that sure what I'd be telling them at this stage without professional advice
i would be seeking advice from medics with specialist knowledge related to flying - due to the drop in air pressure in the cabin people with breathing issues or some heart conditions can have problems which would not occur at normal air pressure on the ground - also babies do not know how to equalise the pressure in their ears during ascent and descent, this can cause them severe pain and distress - ifeel it would be helpful if you were prepared to deal with these issues if they affect your little girl
I heard that giving them a teether (a solid one not one with liquid) to chew/ suck on take off and landing can help with their ears and the pressure 🙂
I don’t have any personal experience of flying with children or specifically with a heart condition but I wanted to wish you and your family a safe flight and a happy holiday.
I would feed my baby as the plane took off and on landing. Swallowing relieves the air pressure that can build up in the baby's ear canals, which can make some babies cry.
I used a baby sling, it gave me a spare hand.
Pack a bag of baby essentials, wipes, nappies etc. Change of clothes.
Any child under 2 sits on your lap throughout the flight.
Several muslin cloths to clear up any sicking up.
Spare T shirt to change into so you don't smell of baby sick.
A bag of toys. Take one toy out at a time, replace in the bag and recycle throughout the flight.
Accept that babies cry, try not to get upset by any rude stares from other passengers.
Don't forget your baby's passport.
It's very tiring travelling with children and babies. I have done it with all 3 of my children at once. Travel with another adult if you can.
If you're travelling alone make friends with the cabin crew!
Practice changing your baby's nappy on your knee, which you'll need to do in the plane's cramped toilet.
Arrange for someone to pick you up from the airport if you are visiting family or prearrange a taxi with a baby seat.
Rest as much as possible the next day, then start your adventures.
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