Surgical consultation prior to OHS

[Oysterbabe]

My DD is 2.5 years old and has a small VSD (hole between the ventricles in her heart) She is going to have open heart surgery to close the hole. Terrified doesn't even begin to describe how I feel about it. We've been waiting for a date and have just received an appointment date for the surgical consultation. Obviously they'll be able to answer my questions at that appointment, but does anyone have any idea how soon she is likely to have the surgery after the consultation? Does anyone have experience of major surgery to a toddler? My husband's worries are about the procedure itself. I'm just assuming that will go well, any mental preparation for the alternative wouldn't lessen the blow so I'm not prepared to give it headspace. My worries are more about how she'll cope in hospital afterwards. I think she's the worst possible age for this. She's a shy and timid child, she doesn't like strangers touching her and won't tolerate anything medical on her. Last time she was in they taped the oxygen saturation thing to her toe and she screamed hysterically until they took it off. She has to have her echos under sedation for them to get any meaningful data. What will happen after surgery? Will they just keep her sedated? Thinking of her frightened and in pain is keeping me awake at night.

Try watching the get well soon children’s tv series with her - you need to make medical treatments part of her norm - even after surgery she’s going to have check up etc
The children’s hospitals are fab and will put all your fears at ease. Of course they won’t leave her in pain.
Write down all your questions to ask the consultant.
There have been past threads about what to take into hospital have a read of those. It’ll be ok

We’ll be in the same boat as you in a few months with our daughter who’s currently 8 months old (when she hits 10kg) so not sure of the answers to your questions but there are some great support groups on Facebook that I’m a member of and there are so many families who have been through the experience already that you can speak with.

One is a VSD specific group - Babies and Toddlers with VSD (Ventricular Septal Defect) Support Group. This is an international group so you’ll have a range of experiences that may not reflect the what you’ll experience if you’re here in the UK.

There’s a more general CHD group for UK families - PATCHES Family Support Group.

You’ll hopefully get a larger number of responses from either of these two groups due to the number of people in them.

Wishing all the best to you and your little one x

If you're on Facebook join "british hearties" group. You'll get info and support there if you ask them questions. I'm afraid I have no first hand knowledge but a friend of mine's son had OHS as a baby and he's flying now! Still has his check ups and it's all going great

My DS had OHS as a baby. Afterwards he was poorly and tired, so just accepted the care and intervention without bother. Before might be more tricky, but you’ll probably only be there a few hours before the surgery, so that part won’t last long. DS was in for 2 weeks afterwards, but his surgery was more complex so you may be out quicker. I was worried about how he’d cope, but he slept such a lot that made it easier.

Just wondering have they not tried to close the vsd with medication my little boy had 5 v.s.d and 1 a.s.d and we avoided any surgery with 2 heart diuretics.

Thank you everyone, all very helpful.

Lovemyhorses no one has ever mentioned medication, I wonder why 🤔
I'll ask about it.

She has one small VSD that causes her no symptoms. The only reason they are closing it is because it is very close to the aortic valve and it has now started to pull part of the valve back into the hole. They think it will damage the valve if left open.

Patching a vsd is much less complicated than fixing a damaged valve or replacing it.
If the damage to the valve increased and had to be replaced it would have to them be replaced if it became leaky or when she's older to allow for the correct flow to the heart as our valves grow with us but artificial ones do not.

They do keep children calm with medication whilst they heal, you can wrap the sats probe around her foot instead of a toe which is less awkward and a Velcro strap to make sure it doesn't come off.
Sometimes children wards especially cardiac wards have iPads/tv tablets to help keep children distracted or see if you could borrow one.

She’ll be having it done at a specialist centre that do hundreds of similar operations with very good outcomes. It is terrifying for the parents but a toddler usually takes it in their stride. It’s amazing how quickly they are up and about post operatively. They’ll be play specialists providing activities, parent accommodation, specialist nursing staff. The issue is sometimes that staff don’t see it as a particularly big deal and can seem quite blasé about what for you is the most frightening thing imaginable.
Most children’s cardiac wards would see VSD closure as routine and relatively minor surgery - although that’s not how it feels for parents!

My son had the same op 3 years ago when he was 6 weeks old. The operation is standard issue in a specialist centre, it's the most common CHD.

The op itself lasted a morning, and didn't take much longer than they had anticipated. My son spent a couple of days in PICU afterwards and came home a week after his op. Recovery is quick.

You'll have some guidelines for once you're home, the most important one being not to lift her from her armpits, as that will put strain on the sternum.

We were terrified of the op, longest morning of my life. The staff was great with us, and even though they told us it was routine, they acknowledged it wasn't routine for us. However, the change in my very tiny baby who had been so poorly since he was born, just incredible.

Try and see PICU beforehand, as it's quite harrowing to see your child on all the machines right after the operation.

Good luck! It won't be easy, but they really know what they're doing.

Might not be an option for your daughter but my dd's incision scar for her OHS (also VSD repair) is across her chest - bra line ish - instead of vertical.

Thanks for sharing your knowledge and experience everyone.

I didn't know they could do that sincewhendid how old was your daughter?

It feels like most people have the procedure as babies, I haven't come across many that had it as a toddler. Her age is part of my worry, she's old to understand a lot but not enough. She's old enough to be freaked out by tubes and stitches, not going home, attention from doctors etc but not old enough to really understand why it's happening.

17 months. She really appreciates it now she is 17!

She was younger than 1 when we found out she needed surgery and talking about it became part of our lives.

I’m sorry to hear this. My dd had ohs surgery for large VSD last March at GOSH, she is now 19 months and the difference is amazing. They’ll sedate your dd for a few days after and she’ll come around slowly. We were in from Mon, surgery Tue and home Sat, she recovered very quickly, I’m still amazed. Your dd will be fine but I understand your worry. Which hospital will she be at? Please feel free to ask anything x

Also someone on here told me that as each tube comes off, the closer you are to coming home. Please be prepared for her to not look quite herself for a bit, she will soon though. Heartline and Heart family group are both great charities and have excellent closed Facebook groups x

Thank you toocold I'm glad your DD is doing well. She'll be having it done at Bristol Children's hospital.

She'll be sedated quite a bit for a few days after the op, so she might not be aware of all the tubes. The hospital should have plenty of experience with this and should be able to help her feel comfortable and at home.

I realise it's scary, and she's at a tricky age for this. Ask the hospital how they can help you.

I suggest joining one of the FB groups mentioned above. You'll probably find lots of people there with a similar story who are happy to share their experiences and give you advice.

The operation is on Thursday and she's going in Wednesday night. The advice and experiences shared here have been helpful.

Good luck Oysterbabe

I’ll be thinking of you all xx

How are you Oysterbabe? How is your dd? X