dla help and any more heart babies out there?

[CRAZYCREW]

Okay my grandson that lives wth me as well as his mummy has cctga.. if you google it nothing comes up as very very rare worldwide. Basically his heart is the wrong way round top and bottom and his small chamber that should pump blood to the lungs has to do the job of pumping to the body and just before christmas went into heart failure so on diurectics now. he is much better though but has to take about 5 medicines and has to be checked for his breathing during the night as his sats can drop very quickly.
He also has ashma and on a inhaler... not heart rlated at all. He also has laxatives twice daily as the directics dries all the fluid out of his body... he needs his nappy changing hourly alos due to this. I have put a claim in for dla do you think we will get it or not.. oh he is slow to feed also can take up to an hour... he is 21 weeks old.

Also is there any more heart babies on here??

Hi, my son although also down syndrome has a heart condition. The hospital social worker applied for his DLA and he received hRC from 3 months old.
He's now 9 so don't remember everything as to how he got it. Though the way he fed and had to be fed was one. Episodes of cyanosis another. Breathing difficulties. Recurrent chest infections, physio, massage etc HTH x

www.achaheart.org/educational_materials/documents/CCTGA_Sp08_10-21-08.pdf

sorry didn't do a link
www.achaheart.org/educational_materials/documents/CCTGA_Sp08_10-21-08.pdf

Hello crazy - yes my 'baby' has congenital heart disease. She's 16 now She has a condition called ALCAPA which affected the connection of her left coronary artery. She was undiagnosed until she went into multiple organ failure and end stage heart failure by which time she had, had a couple of heart attacks and suffered irreperable damage to her heart muscle. She also has 3 dodgy valves and pulmonary artery stenosis. she does pretty well considering, is on meds still and was tube fed for a long time.

We get DLA for her, low rate care now and low rate mobility - we've had all sorts of combinations over the years. It can be a bit hit and miss for CHD, to be honest. We had to go to appeal once for dd then the time after that with pretty much the same form, got high rate care

I post on the forum at Heartline here where there are definitely a couple of children with ccTGA and some grandparents too, and parents being put through the wringer by the DLA. Come on over, you'd bemade most welcome.

My daughter is 9 months old has Downs and various heart problems, currently waiting for second open heart procedure. She gets DLA at highest rate as she needs oxygen at night (none during day). I emphasised longer times for feeds, constant need for close monitoring in case she goes blue, medication, personal care. I think you just have to paint the worst picture of your child's needs - which can be a bit depressing, but necessary to make a claim. The downs syndrome association publish a guide on applying for DLA at different ages. Although it is specific to Downs most of the comments/advice can apply to any child with a disability. You can get a copy here:
www.downs-syndrome.org.uk/resources/publications/benefits.html

Hope that helps.

My baby (who is now 3) has TGA (not cc though) and we got a lot of support from heartline. www.heartline.org.uk/

Please join us!

Hi my baby is 11 months now he was born with a heart condition called dorv and a hole in his heart.He had 2 surgeries at 2 months of age due to his heart failing.1st surgery was pointless thy did a Banding procedure to slow the blood flow to the lungs which did not help his condition was getting worse.So 2nd procedure to close the hole in the heart and make a way to flow the blood to the whole body.this was successful however the arteries are both still on the right hand side and doctors have stated the blood is now flowing to the body however we need to keep a eye on his breathing as he might require another surgery later on life.if the area of the heart that is helping flow the blood to the body gets blocked it will need surgery again and is very dangerous. Pls can someone advise me as a single parent I'm awake until early hours watching my son can I apply for dla even if his heart is corrected and we still have special access to the hospital and thy still is a worry for his weight gain so the feeding team weigh him monthly and review him every two weeks.He will be reveiwed yearly by consultants and has recently stop medication and tube feeds pls advise if I will be able to get dla ?

Hi everyone,

I’m looking for advice and support. My 2-year-old son has a heart condition called SVT (Supraventricular Tachycardia) Jet, which he's had since birth. I recently applied for DLA (Disability Living Allowance) but was declined. I’m wondering if there are any other parents out there whose children have heart conditions and have successfully been awarded DLA?

My son requires constant supervision and monitoring of his heart rate, along with the administration of medication. On top of that, I’ve noticed a lot of other developmental or behavioral things with him. I’d really appreciate any advice or experiences on how to approach this or if there’s anything I might be missing in the application process.

Thank you in advance for any help!