Toddler due to have operation to close VSD

[AmateurParents]

Hi,

My DS is 2.5 and is due to have surgery this summer to close a medium VSD (Ventricular Sepal Defect). As it is on a valve, they are not happy with the way that his heart is growing and say that with age the hole will get bigger and could eventually prolapse and become catastrophic. It will be completed at the Royal Brompton in London.

Just wanted some advice if anyone else has been through this, or have any hints and tips how to prepare and look after a toddler for surgery!

Hi, my son has tetralogy of fallots, he had surgery when he was 8 months old. Also at the brompton. Have you got facebook? There is a fab brompton fountain page for families who can give you support etc and a few other pages too!

I can say that the brompton is a fantastic place! We owe them everything!!!!! Here if you want to talk xxxx

Hi OP, my little girl had heart surgery at RBH when she was 8 months old (summer ‘16). She had a large VSD plus other complications. You are in very very safe hands.

Are you on Facebook? If so I recommend the group “The Brompton Fountain - Closed Group for Brompton Families” which is a private group (so messages can’t be seen by anyone outside the group) and can offer so much support for you.

Have you visited the Brompton yet? Speak to your cardiac liaison nurse to arrange a visit if this will reassure you. Do you have any specific questions?

Hi, my DS is under the Brompton for myocarditis/dilated cardiomyopathy, we were there on PICU/HDU/Rose Ward for 6 weeks in late 2016. They are amazing and will look after your DS wonderfully. I cannot praise them enough!

I would also urge you to join the private Brompton Fountain Facebook group, you will get loads of advice and support there from other parents.

Hope the surgery is very successful x

Thank you so much everyone! So reassuring to hear all your feedback and how happy you were with RBH. We are meeting with the surgeon soon (once they get us an appointment) to discuss all the details and hopefully get a date in sooner rather than later.

How was the recovery with your little ones? I am so anxious about it all. Especially now he is a toddler and questions everything. I don't want him to remember anything. I know there are some good books out there to introduce hospitals and doctors etc, but any first hand advice would be more than welcomed!

dd had 13 operations between age 18 months and 2.5.

She doesn't remember the hospital, the operations, the doctor, or the problem they were solving.

It wasn't heart and the ops were all day ops, so much smaller, but you would think after 13 times she would remember something.

We had a hospital dolly, (and several other soft toys that were specific to the hospital trips) The dolly was small cheap one from tesco, but crucially it had eyes that closed. I used to talk her through going to hospital, being in a bed, going to sleep, like dolly and waking up in hospital bed with Mummy.

The play therapists are amazing and they will act it out (bandage on hand, dolly getting temperature taken etc) with the child before hand.

Possibly the worst feeling in the world is seeing them go off to the theatre, and then waiting, I won't lie, that is tough, but knowing they are in safe hands helps.

My neice has had 3 major heart ops, and they used to have a complete first aid kits with all the hospital stuff in, like syringes etc and play hospitals a lot afterwards each time, it was her way of processing the experience

Hi, I’m just searching for some similar stories. My girl is 3.5 and has a vsd near her valve. She has to have checks yearly to see how she grows. How did your surgery go?

I have TOF, all corrected now, at RBHT too! They are first class at what they do. I have had 2 surgeries and other procedures under them and am healthy and happy now - your little one will be just fine!

So good to hear these stories. The worry I have is to the pit of my stomach. Honestly feel like my own heart needs fixing :) thank you