mental health support for children with a Congenital Heart Defect

[AllieKatt]

Hi everyone! I was born with a CHD and I am now a student children's nurse. I am writing my dissertation on mental health support, or lack of it, for children and their families born with a CHD and I was wondering if anyone knows of any charities, policies or information they have been given for support for either themselves of their child after diagnosis? Thank you!

[Milkfairy Heart Star]

Hello,

Are you aware of the Sommerville Foundation?

This is a charity for adults born with congenital heart disease.

sfhearts.org.uk/

There are other charities for children with heart problems,

chsf.org.uk/

Children's Heart Federation

chfed.org.uk/

Tiny Tickers

tinytickers.org/

Also perhaps have a look at the websites of the hospitals that offer children's heart surgery?

Good luck with your dissertation.

[AllieKatt in reply to Milkfairy]

amazing thank you so much!! I’ve been looking on tinytickers but not the others so will have a look now. Thank you for your help

[Yumz199725]

Hi I was also born with congenital heart disease ❤️. It wasn't till recently that I joined online support groups. Hope you can find some online support aswell. The only support I received when I was little was from a specialist children hospital which is a very well known children's charity GOSH, but I feel that when you become an adult there's not much support for people like us x

[AllieKatt]

Hi! Thank you so much for sharing your experience. I will have another look on GOSHs website, I did go there as well but only as an outpatient so it might have been a little different! Thank you again, I really appreciate it

[Yumz199725 in reply to AllieKatt]

Oh wow I'm glad you was able experience being treated there it's definitely the best children's hospital, I was born in Essex hospital and rushed to London to GOSH for emergency surgery at a day old ❤️ so I had two surgerys done at that amazing hospital ( Read my bio for my info) , I was an outpatient there too for 17 years. Can I ask what congenital heart problem do you have?? ❤️X

[AllieKatt in reply to Yumz199725]

Thank you! Aw wow sounds like a crazy time for you and your family! What was it like being an outpatient there and how old were you when you had your second operation? I hope you don’t mind me asking no pressure if you don’t want to say ☺️ I didn’t have my surgery there I was just monitored as an outpatient, I wondered if you got any support or information about well-being and your mental health from GOSH at all? ❤️

I had my operation at Leeds (the hospital no longer exists that’s how old I am 😂) but then went to Northampton children’s for a while and then GOSH for about 5-6 years before going to Leicester all as outpatients, had a bit of a journey around the children’s cardiology units 😂

I was born with a atrioventricular septal defect which was repaired when I was 8 months old, should have been repaired sooner but it wasn’t picked up till I got really poorly. I also have a subaortic stenosis which I will have to have surgery on eventually but it’s currently fine and hasn’t changed for a long time so can’t complain 🥰

Thank you so much for your reply! X

[Yumz199725 in reply to AllieKatt]

It was definitely a crazy time! Well so I here 😉 obviously I don't remember I was too young 😅. I had my second procedure when I was 13 so 13 years ago in November. I don't remember much but one thing I do remember is how friendly and helpful everyone was really made it a fun experience, was so sad to leave 😞. Oh wow Leeds hospital, do they specialise in congenital heart disease?? Oh wow I've never heard of your condition hun. I will eventually need valve replacement surgery is that what surgery you will need?? X

[AllieKatt in reply to Yumz199725]

Of course! 😆aww ok that does sound really nice, sounds like they made you feel very at home which is what you need! They do, there's a few children's cardiac specialists across the country and I think at the time Leeds was the closest to where we lived. It's not a common one, don't think yours is either though right? 😜Yep that's the same as me! xx

[MummaSoap]

Hi AllieKatt , well done to you for seeking to highlight this topic.

I wanted to add that there seems to be a distinct lack of support for young children (well any children) who live with a parent diagnosed too.

I remember being told about pumping marvellous for support in explaining my condition to my children but there hasn’t been any real external support for them.

Wishing you all the best with your dissertation, I’m sure it’ll be a great success!

Best wishes

Soap 🧼

[AllieKatt in reply to MummaSoap]

Hi Soap,

Thank you for your reply! That’s such a good point I don’t think I’ve seen any support for this either!

I will definitely check out pumping marvellous, that does sound like a handy resource.

Thank you again, I really appreciate it ❤️

[Livelovelife56]

Good morning AllieKattMy son was diagnosed in 1019 with HCM & Aortic Root Dilation. While the nurses at the hospital he is seen at are really supportive and will answer any questions I have. He is currently under GOSH and there is information and printable leaflets for cardiology. But nothing for mental health concerns regarding his diagnosis.

I was given at his first appointment a nook on Cardiomyopathy from Cardiomyopathy UK and the support nurses there have always been helpful. BHF is very good and has also been very helpful. The people on this forum helps give a personal experience of symptoms and things to look out for.

But if I completely honest I have no real support for his or my mental health since getting his diagnose. I wish there was something as this has been very difficult for both of us.

i hope if you do find any info on supporting mental health after a diagnosis you might share with us.

Good luck 👍🏾

[AllieKatt in reply to Livelovelife56]

Hi!

Thank you so much for your reply and for sharing yours and your son’s journey. I hope he is doing well.

It does seem that mental health support is really lacking but if I do find anything I will make sure to post it on here! ❤️

[Livelovelife56 in reply to AllieKatt]

Thank you I forgot to mention if the child or young person is at school or college parents can cintact schools to speak to paediatric nurses attached to schools. They can often then speak with SALT team or OT or even refer to CAHMS if needed.

Good luck 👍🏾

[AllieKatt in reply to Livelovelife56]

Oooh ok that's good to know! Didn't even think about the SALT team, OT or CAHMS being able to help so that's a brilliant shout, thank you!

[Hidden]

I hope you find enough information for your dissertation. For me being new to this unfortunate club of congenital heart disease, as an adult I am struggling. I have to admit the shock of finding I have a congenital heart disease since birth but only finding out at 56 years old has definitely floored me. My current medication for the mental side of things is 100mg setraline, and iam undertaking high level cbt. The mental side is the hardest part. However the other problem is that my condition of ebsteins anomoly can and does cause cyanosis, especially on exertion. So my next question is, does low oxygen effect the brain causing changes which can then effect the way you think and react to life? See I managed to survive until my grand old age of 56, but I did start on anti depressants back in 2008. Long before I had this earth shattering diagnosis. The other question, are you better to know when young or to have the shock thrust upon you when your are older and have assumed your are normal? What ever normal is.? How iam going to beat this I do not really know. The trouble is I have got to except that this was how my heart was made and my body has adapted to it, but as you get older things change, blood pressure can go up your arteries can get stiffer and all natural changes can take place to effect the circuitry. Then on top of of this you are then thrust onto medication, in theory to help, but that then changes how your body has to then re model itself and adjust. For people with congenital issues the therapy needs to be designed differently. I don't know the answer as iam on this horrible journey. All I can say and hope for is that you find away of getting answers to a complexed issue.

[AllieKatt]

Hi,

I am so sorry to hear about what has happened and your experience. I can't imagine what it would be like to get such a diagnosis as an adult. Interestingly my Grandma was diagnosed with a heart defect, I can't remember the name of it but I know she had to have a valve replaced. But since the surgery she's been really well and it has made a big difference to her energy levels and day to day life. I know it won't be the same journey for you and I do hope they are able to help you out further, it does really impact your mental health if you are getting tired quickly or short of breath, especially if you are comparing yourself to your peers.

If I do find any potentially helpful or interesting information I will post it on this thread just in case any one fancies a look. 🙂

I do agree that mental health support should be tailored to people with a Congenital Heart Condition or even people with any form of life-long condition as it must effect our mental health!

Take care of yourself and thank you for taking the time to reply xx

[Hidden in reply to AllieKatt]

Found this just wonder if it might help you?Glad to hear your Grandma is doing well.

Take care.

Some information

[AllieKatt]

Hi anyone who see's this,

I've just found this really sweet site that makes dolls with heart surgery scars! I know I would have loved this as a kid, I wish I could get one now anyway I thought those with younger children might want to take a look? Plus it's free!

chfed.org.uk/how-we-help/mo...