CCTGA, Large VSD, tricuspid hypoplasia, pulmonary stenosis

Hello everyone,
I am a new member and looking for advice, My beautiful baby boy was diagnosed with very complex rare heart defects ( CCTGA, Large VSD, tricuspid hypoplasia, pulmonary stenosis). Our whole world just turned upside down when we heard this news. We have 2 more healthy boys 7 and 4 years old. we would do anything to give them what ever care they needs but thinking of the financial uncertainty as well. We both used to work and now the newborn baby would need much more looking after and multiple surgeries and hospital stays. I would look after my newborn and husband would need to look after my other boys. In this situation I am scared what would I do financially. please advice If i can get any financial help from any charities of Gov in this situation. My baby's hospital sen a letter to my council to rehouse us asap because of baby's health condition but council didn't reply. Baby is going to have his first open heart surgery in 3/4 weeks and i am panicking.


  • Contact Helpline TeamContact Helpline Team Member, Community Moderator
    edited May 2020
    Hi @farzuk , welcome to the community, hope you are OK. You obviously have a lot on your hands at the moment, hopefully some other parents will share their experiences soon.In the meantime I checked in with our Helpline team for some advice for you and this is what they said:

    Disability Living Allowance is the main benefit for children who have additional care and mobility needs. You can find information about DLA on our website here:

    Any child who has a disability or illness might qualify for DLA, and you don't need to wait for a formal diagnosis to make a claim. However, you will need to show that your child needs substantially more care or supervision than other children of the same age who don't have a disability or health condition. Any decision to award DLA will be based on how your child's condition impacts on their day to day life.

    If you are thinking of not returning to work, or reducing your hours due to health care needs of your baby it is important that you get detailed advice. Your chances of being able to claim benefits as a carer will depend on a number of factors, including whether your baby is receiving Disability Living Allowance at specific rates. You can this through with a helpline parent adviser . They may then suggest a call back telephone appointment with the family finance team. You can find out more about our helpline here: including how to get in touch.

    I do hope that is of some help,

    Take care

    Rachel (Contact)
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