ASD and more

[Beachandwalks]

I am the mother of a 2 year old who has been diagnosed with a heart condition since birth. I have been told that she will require surgery but the hospital keep pushing back when it maybe. She is now getting more ill and I am determined to keep challenging them on their reasoning for pushing back when the surgery will be. This is honestly draining mentally and physically to see my child suffer... is anyone else going through a similar situation? Feel so alone and overwhelmed right now.

[Tos92]

I’m so sorry to hear about your little girl. I don’t have any experience with your situation however, I did want to suggest contacting PALS (patient advice and liaison service) at the hospital if you haven’t already and they should be able to investigate and tell you why the surgery keeps getting delayed hopefully. They may even be able to get you a surgery date.

I imagine it’s very tough to see her go through this. I hope PALS are able to give you some more info and others come by who have dealt with this before with some useful suggestions for you and your daughter.

Wishing you and your daughter all the best. Let us know how she is doing.

Tos x

[Beachandwalks in reply to Tos92]

Omg thank you sooo much for replying!!!

Appreciate the advice. I will definitely make contact with them.

Thank you. I will do 🙂

[Bumpitybump]

I cannot begin to understand how challenging this must be for you. PALS a great suggestion I would add just keep chasing any contact you have. When you get near a surgical team or surgeon likely you will have a secretary to liaise with, update them with any symptoms you feel they need to know. There are some very talented medics who will be wanting to get this right for your daughter. Do take care of yourself, tap into any support you can. All the best.

[Beachandwalks in reply to Bumpitybump]

Thank you for your kind reply.

I made contact with PALS.

Yes good advice. I agree and will.

Thanks again really like and appreciate the genuine support

[Cat04]

Not sure where you are on your journey - has your daughter had a cardiology appt yet? Has she been referred to a surgeon & on a waiting list? Has she had any diagnostic tests/pre-op assessments?Depending where you are in the system - you can tell your gp that your daughter's symptoms are worsening and you need a cardiology appt for her, or you can contact the cardiologist's secretary to report the change in symptoms & request to be seen soon. You can also ask to be put on a cancellation list for appts if you are able to attend at short notice.

If she is on a surgery waiting list do the same by contacting the surgeon's secretary.

Hope you get some answers soon, keep us updated ❤️‍🩹 x

[Beachandwalks in reply to Cat04]

Hi

Thanks for your reply.

Yes she had a cardiology appointment last year. She is due another one... I contacted the cardiologist team to again update them and inform them of my concerns along with the gp's opinion.

I was told somone would be in contact in regards to a rapid access appointment. However, they have not so I'm chasing them up about it.

I definitely will.

[Lowerfield_no_more]

What are the reasons you have been given for the push back? There might be medical reasons for delaying the corrective procedure where the risks of operating outweigh the benefits. But if it is waiting list dependant then you should be able to find out whether it is classed as routine or urgent. If it is routine then reclassification to urgent may bring the date forward, especially if your daughter is deteriorating, but this will require the intervention of the cardio team who are responsible for your daughter. You could also get her placed on a cancellation list if the hospital run one which will mean she can be seen at short notice. And as others have said enlisting the help of the hospital PALs service may support your situation.

[Beachandwalks in reply to Lowerfield_no_more]

The reasons given is that she is growing and they want to wait until she is a "little" older. which I think is ridiculous as now she is weeks away from being 3 years old and was told this when she was months old. I was given no other medical reasons for the delay. But I will certainly be asking this.

Honestly I appreciate your advice. I am literally taking note of all said. I feel so much more empowered.

Yes definitely- I contacted PALS and they are providing support.

[Milkfairy Heart Star]

The Children's Heart Federation is a charity dedicated to helping children and their families with heart conditions.

They maybe able to provide you with further support including the opportunity of being in touch with other parents and families.

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

I hope your wait isn't too much longer.

[Beachandwalks]

Thank you so much for your reply.

Appreciate the advice will definitely check them out.

Awww thanks

[Beachandwalks]

Hi just a quick update

I had my daughters cardio rapid assessment and I saw a very lovely doctor who listen and explained everything and more to me... so I now feel more empowered and of good knowledge as to why they are holding off on doing her surgery any time soon.

Thanks again to everyone who reached out. Truely appreciate the support given!!