I’ve included a photo of our son in intensive care (with all the tubes, drains and the recent scar on his chest) right at the very bottom of this post.  If you don’t want to see it, please don’t scroll down past the picture of him wearing a red fur trimmed Christmas hat!  (I have much better pictures of him but thought the hat would act as a good recognisable stopping point if necessary).

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If you’ve been told your child needs open heart surgery you’re probably feeling absolutely terrified about it, aren’t entirely sure what to expect and are almost certainly fearing the worst. Yes it feels like a very big deal and feels very scary.

Our little boy had open heart surgery when he was 7 months old – a complete AVSD repair.  Heart defects can be common in children with Down Syndrome.  We’d had a 1 in 5 risk of Down Syndrome at our 12 week scan and the cardiac defect was picked up at a 16 week scan.  We knew what was coming then so that gave us more time to get our heads around it.  I thought I’d write this post ‘Open Heart Surgery: A Mother’s Story’ in case it’s helpful to anyone else.  To us now it was just a blip in time and he’s a very healthy and busy 4 year old boy!

I trained as a cardiac perfusionist at Barts Hospital in London (running the heart lung machine in the operating theatre) and set up the Heart Valve Bank in Bristol (human heart valves are prepared for transplant). I’ve seen so many operations, which has helped to desensitise me I suppose.  The surgeons are doing so many all the time, they’re so talented and every patient has a strong team supporting them throughout.  I was so very thankful not to have any fear leading up to the operation. I can only imagine how it must feel for parents that haven’t had these experiences.  I think I would have been beside myself.

Your cardiologist has probably drawn diagrams to help explain what needs to be done and how they’re going to do it.  They may also have given you an idea of how long your child will be in hospital.

The day before the operation they’ll take blood samples to make sure your child is well enough for the operation and to ensure they make all the right decisions for your child during their time in hospital.  If you’re not local, you’ll probably have to stay overnight that night.  They also offer to show you around the intensive care unit beforehand, which I’d really recommend.  It’s actually not scary at all, just quiet really.  Also find out where you can express if you’re breastfeeding and if you haven’t done so before, ask about any meal vouchers and what time the canteen and any hospital shops open and close!

One of the surgical team will go through the consent form with you before the operation and this is a surprisingly really hard bit. They tell you again what they propose to do and explain all the risks: including the big one (death), stroke, problems affecting the brain, infection, kidney failure….this is probably the first time you will have heard all this in quite so much detail and you’ll probably feel like running away.  I

I remember the doctor that went through it with me, looked at me after I’d asked him a couple of questions and said ‘you have no choice.  He needs this operation.’  It was true.  If I didn’t signed it I would be knowingly compromising his quality of life and he simply wouldn’t survive.  Do ask any questions you have and don’t feel you’re being a nuisance.

Then it was time.  Stripped down to his nappy and in a little gown, I carried him down to theatre.  The anaesthetist said I could hold him and warned me that children with Down Syndrome often need more anaesthetic for some reason and that he would probably fight it.  They held a mask over his nose and mouth and yes he did get quite squirmy!  The second he was ‘under’ they quickly took him from me and I left.

Then the waiting.  The awful waiting.  We were told it would be a good six hours before the operation would be finished.  I felt really bereft without the little baby I’d been holding and feeding for the last 7 months.  It was like I’d forgotten something.  You just have to do what you need to do to pass the time but I would strongly suggest that it includes eating and drinking!  You’re no good to anyone (or yourself) if you’re dehydrated with low blood sugar (seriously – you should make sure you eat and drink properly while you’re in hospital. It will make a massive difference to your ability to cope).  Don’t forget you’ll need to express milk during this time if you’re breast feeding too…

The surgeon called me on my mobile…I was almost too scared to answer it.  ‘Good news, the operation went really well.  One bit was trickier than we thought but I’m actually very proud of the result.’  HUGE sigh of relief.  We had to wait for a second call while he was being transferred to the CICU (Cardiac Intensive Care Unit) until we could go up and see him.  That was only about 20 minutes or so (I think).  Not long anyway.

We were prepared for what he would look like in terms of tubes and machines and knew that he was in a drug induced sleep and ventilated (machine breathing for him) etc.  I didn’t realise he could have his own soft toys and blankets etc so do take what you like in.  The staff in CICU really are in a league of their own.  They’re incredibly knowledgeable and competent and our boy had around the clock, one to one care at all times in CICU.

Even while they’re ventilated you can carry on caring for your child – change their nappies, be with them, touch them, chat in a normal voice, bring friends in to visit (1-2 at a time I think).  Our children came in – they were 3 and 4 years old at the time and as the staff said would probably be the case, they didn’t seem to notice any of the tubes or equipment, they just saw their brother.  They weren’t in the least bit scared or unnerved.  I asked them recently how they remember that time.  Our eldest started school while her brother was in intensive care too so there was a lot going on for her. They both shrugged their shoulders and said ‘it was ok.’  They say they don’t remember much or feeling sad or worried, which I’m pleased about.

Our boy (little monkey) had a couple of complications after the op, which wasn’t usual at all judging by all the positive stories we’d heard BUT he’s absolutely fine now!  His rocky post-op period included kidney failure (he needed peritoneal dialysis until his kidneys picked up again) but that resolved after a few days.  He also developed ‘chylothorax’ (day 3), which is where fluid fills the pleural space (the tiny space between the lungs and the chest cavity) and puts pressure on the lungs.  He had to have extra chest drains put in and be fed a special fat-free diet (no breast milk) via an NG tube (tube through his nose down into his stomach) for 6 weeks after his last chest drain had been removed.  I was devastated.  I as far as I could tell, I couldn’t hold him for the foreseeable future and I couldn’t feed him for the next 6 + goodness knows how many weeks.  (Of course once that critical 6 week period was over, he went straight back to breastfeeding and that was the end of that.  It felt like absolutely forever at the time).

Four days after the operation I had a call at 5am from one of the CICU consultants (they gave me a room just outside the hospital).  He’d had a seizure, they didn’t know why and they were taking him for a scan.  The results came back and they couldn’t really see why, everything looked fine and ‘sometimes this just happens,’ it might be as a result of being on bypass.’  Two days after that and he had another seizure.  To cut a long story short, he was put on to anticonvulsants, which he was then weaned off and he’s been absolutely fine since.

You can tell how your child is progressing because as they get better, one by one the number of machines they’re hooked up to and the number of syringe drivers go down!  On day 7, he was ‘woken up’ and ‘extubated.’  He was breathing by himself and no longer ventilated. Now that was a VERY good day.  Our little boy was back!

When we got to HDU his poor little tummy was so swollen and he had the most awful wind.  It’s a side effect of the morphine apparently and really common.  I wanted him to have the baby equivalent of ‘Rennies’ and some fennel tea or something.  Do ask the medics if they can prescribe something if this happens to your little one. He spent the next week on on the HDU because of his chest drains and on Day 10 I got to hold him!  We were both in a  complete tangle with all the drains but the nurse somehow managed to sort us out and it was the most wonderful moment in the whole world.  We were told we couldn’t go anywhere until there was nothing coming out of his chest drains and he’d had a clear chest X-ray and a clear ultrasound.  Finally on Day 14 we were allowed to go home!  You just don’t get any sleep in the HDU or on the ward – we were all shattered!

*I must just stress this was an unusually difficult post-op period and not the norm at all!*

We were told to carry him in the traditional baby style (ie. don’t pick him up under the arms) for the next 6-8 weeks until his sternum (breast bone) had healed.  We had regular outpatient checks with a cardiologist.  I can’t quite remember the frequency but it was something like 2 days, a week, a month, 2 months, 3 months, then every 3 months, then every 6 months and now annually.  Other than that – life has proceeded as normal.

He’s such a fabulous boy and so well.  We spent 2 hours in the park yesterday morning and then I took him to the zoo yesterday afternoon.  He ran around it for 3 hours solidly with one five minute sit down.  He’s just turned four 🙂

If you have any questions about anything at all, please don’t be afraid to ask your cardiologist and / or your cardiac liaison nurse. They’re there to help you and have seen and heard everything before!

An ‘absolute must have’ is a pay-as-you-go phone that your partner and the hospital has the number to for emergencies.  You will be inundated with texts from lovely friends and family, which is totally wonderful but not when you’re trying to get some much needed sleep.  Then you can turn your own phone off and leave the emergency one on knowing you can be contacted if needs be.

 ***Hospitals also offer a free on-site counselling service if you’d like to chat to someone***

Links you might find helpful:

British Heart Foundation
Down’s Heart Group
Preparing Children For Heart Surgery
After Heart Surgery: Caring For Your Child
Children’s Heart Federation – Performance Guide

 

 

If you keep scrolling down you will see a picture of our boy in CICU .  The white tube going into his belly is the kidney ‘peritoneal’ dialysis.  Teddy’s are very helpful in intensive care for propping up the ventilator apparently!

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Open Heart Surgery: A Mother’s Story

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