Holes in Heart...

[Zoidy]

Hi

I am new to this so forgive me if I don't get the acronyms right but here goes..
My daughter (first born) is now 6 months old and was diagnosed with 2 holes in her heart at aged 2 months. We were originally told she would definitely have to have open heart surgery but more than likely when she was about a year old. They have now decided to do the operation in the next 6 weeks - due to her not responding too well to the drugs she's been on.

I have been told all the ins and outs of how this operation is going to go but I would like is to 'talk' to another mum who has been through this nightmare. I am not looking for reassurance necessarily (although that would be great!) but more someone to tell me their experiences - how their baby was when they woke up, whether cuddling was painful, how long it took before the pain seemed to go away.

The hardest part of all of this is that Freya (my daughter) is just the most gorgeous (ok so I'm bias!), happy and contented little girl. You wouldn't know she was so sick apart from the fact she's a little small - 12lbs 6 at 24 weeks.

Any help or info would be greatly appreciated.

Thanks

[Fio2]

Zoidy, there are a few mums on here who have been thorugh this so will be able to help you. fairyfly, survivor and eidsvold are the ones that spring to mind.

I hope it all goes well for you both, it must be a very worrying time for you. Lots of love from me xx

[Bagpuss30]

Zoidy, hello, my ds (now nearly 4) had open heart surgery at 4 weeks old. It was quite a shock to us as we had know idea that he had a heart condition prior to that. With ds, recovery was actually quite quick. We were in and out of hospital in around two weeks which is unusual for his operation (arterial switch), so we were very lucky. Where is your dd being treated? We were at Alder Hey. I am sure you will get a lot of good advice here and I myself would only be too happy to answer any specific questions you have, although ds has minimal appointments/treatment now, I can still remember most of it. HTH

[luckymum]

Zoidy, Hi

My dd has a heart condition diagnosed at 4 months. She's 10 now, has had surgery but not a full repair. There's a really good message board here where you'll find loads of help from mums of children with CHD. Also have a look at this site .

My daughter was operated on as an emergency and she was pretty sick beforehand so took a good while to recover. Planned surgery is usually quicker to get over, maybe a couple of days in itensive care and home in about two weeks but it really does depend on the defect. Where will Freya be having her surgery?

[Blu]

Zoidy, I know something of the organisation in the second link luckymum gives, and they have a very good helpline, and I think will put you intouch with a Mum who has been in the same position.
Hold tight - this can't be easy for you, and i hope you get the info you need.
XXXX

[Fairyfly]

Hello, sorry Zoidy for your news, my son has had surgery but not open heart so can't be of much help.
I find out in october if he needs it, so far they have put it off at each appointment. He was also at alder hey, all i can say is they treat you so well and of course your children. There were a lot of little girls and boys on the ward after open heart and they were happy little souls once things had settled down.
I wish you all the best and i hope you get some better advice about the procedure and recovery. Must be an incredibly stresful time for you, lots of luck x

[Wallace]

Hi, My daughter is now 3. When she was 18months she had the hole in her heart repaired.
After the surgey she spent a day in the Intensive Therapy Unit (intensive care) and a day in a High Dependancy Unit by the third day after her open heart operation she was RUNNING around the ward.
She was in pain straight after, but they keep them well sedated if they are distressed. I was breastfeeding her by 2 days after the surgery - very tricky with all those tubes and wires, but the nurses were very good and helped move her from the bed to me, and changing sides.

Expect lots of tubes and wires - I think i remember there being about 14! Most of them will be removed over the first couple of days post-op (with luck!)

Anyway, we left the hospital 5 days after the surgery. It was all over so quickly.

Must go and do bedtime story, if you have any questions, ask away!

Oh, and hugs for you and your daughter, I know eaxctly how you are feeling at the moment and it is not nice!

[geekgrrl]

hiya zoidy, my daughter is now 3 and had a PDA & VSD repair via open heart when she was 7 weeks old. She was very ill beforehand and had a few complications afterwards - it ended up being a rather lenghthy hospital stay and I don't think our experience is representative of this kind of surgery, particularly with your dd being in such good shape. What I can say though is that my daughter is very healthy now and her heart is absolutely fine.
Whereabouts are you ging for the surgery? Dd had her heart fixed in Leeds. Good luck to you - I know how hard the waiting game is. Have you had a tour of the wards yet?

[Zoidy]

Hi Everyone,

Thanks so my for your support it is great to hear from other mums in this situation. Freya is to be treated at Glenfield Hospital in NW Leicester where they have a specialist cardiac unit. I have been round the ward and it all seems great.

We have also met the surgeon, who seems nice. They keep telling me that this type of surgery is routine and whilst that is reassuring it doesn't stop me worrying as I am sure you can all understand (some more than others)

Its great to hear from you all that they were all up and about so quickly after surgery. they have told me to expect about 2 days unconcious in ICU and then on to the ward. I am expecting this to be the worse time as I will unable to do anything but unable to leave.

I suppose we are lucky that we have had quite a bit of time to get used to the idea of surgery unlike some of you - that must have been scary.

One of Freya's symptons (well actually her only one really) is that she struggles to feed. it can take up to an hour to get her to drink 3oz as she gets tired. They have assured me this will improve after surgery and I was wondering if any of you had any experience of this? She is being fed on Infatrini (a high cal formula - like lard in a bottle!) and I think will continue on this for some months after the op.

One more question that springs to mind right now is about the scar - how long did it take to heal, how much bandaging was there, how does it look now etc etc. Things just keep occurring to me!

Thanks so much for the links Luckymum - will definitely check them out.

Thanks again to you all for your support and help - am feeling much better already and much less alone.

Z xxx

[Blu]

Zoidy, very pleased to hear that you are re-assured by the hospital, surgeon etc.

I have no experience of heart surgery, but my DS did have 4 ops over 5 weeks when he was about 10 months.

The aneasthetist will talk to you before the operation, the day before or whatever. Ask him/her what the procedure will be: I stayed with DS and held him until he was unconscious each time. The aneasthetist is also the person to ask about what post-op pain relief, and how they intend to handle it.

Find out from the ward sister where you should wait while the op is in progress (and at the booking in or assesment meeting, where you sign the consent form,) ask the surgeon roughly how long the op will take. They will call you as soon as your DS is in recovery, so they need to know where to find you - IME there is often confusion arund these sorts of things!

Have someone with you: the wait while your little one is in theatre is unbearable. Work out how yu will inform the relatives who will be anxious at home; you won't be able to use your mobile, and you won't want to spend loads of time on the phone when you could be comforting your baby.

Think about food for you. The canteen is often horrible and miles away from the ward. Have snacks and someone to fetsch sandwiches.

Children's wards, Intensive care and HDU's are emotional places - expect to meet parents with children who are far sicker than yours. A bit like MN, they are also places where parents make intense relationships with each other. While DS was in theatre for 5 hours a woman whose 2 year old had fallen from a window physically clung to my neck waiting to find out if her child would be brain damaged(he wasn't).

And the best thing? It is all over in a flash, it is nowhere near as bad as you will have feared, and please believe me, the kids sail through it while the parents are in ruins!

[geekgrrl]

yes the feeding will be much improved! my daughter lost 1lb off her birthweight in the first week and then never regained any weight until her heart was fixed. The change in colour was also remarkable, she was very pale before and suddenly there she was in ICU hooked up to a vast array of machinery but all rosy-looking. Her respiratory rate was also poor before - double what it should have been - and that improvement was remarkable, too.
The cut healed really quickly (I can't remember exactly, a week or two) and the dressing - which was just a big plaster - was taken off after a few days.
The sternum takes longer to heal and you can't pick her up by holding her chest from both sides for a month or so. It's not a particularly bad scar, as you probably know the stitches are on the inside of the skin so it's just a thin straight line with three dots underneath where wound drains etc had been inserted.
The sternum is held together by wire loops or staples, and those can be felt under the skin as slight bumps (and look very interesting on chest x-rays!).
My daughter had to have several chest tubes in as a result of a complication she had, and those scars are more obvious, a bit like extra nipples. But you get used to it.

[Bagpuss30]

Hi Zoidy,

Yes, I have had experience of poor feeding with ds, before his op too. You will not believe how different your baby will be afterwards either!

Scar-wise, I think that you will not be able to bath your dd until the knots at the top and bottom of the incision drop out, which for us was about a week after we returned home, so lots of topping and tailing needed. The scar itself healed pretty quickly, was red/pink for a while and by about 10 months I remember very clearly that it could hardly be seen. I have some pictures I could post of ds in ICU, in the bath at about 5 months and also a recent one of him in the garden last summer if that helps you. The bandaging is fairly minimal after surgery. DS had his chest open for a few days (which they sometimes do with older babies as the heart tissue can swell and cause probs so they let it settle before closing up). Even with an open wound the surgeons put a silastic (sp?) patch on and then dress it with a normal gauze type dressing. If the wound is closed then just a dressing would be used and they come off fairly quickly, once back on the ward. I shouldn't think your dd will go home with any sort of bandage.

The time you spend on ICU will not be as bad as you think. I was surprised as ds had one to one care with a nurse and she was as much support to us as she was to him (We asked loads of questions all the time and the nurses were very helpful). The nurses also let us do ds's eye and lip care, change nappies (no getting out of that I'm afraid!) and feed him milk through an NG (?) tube which made us feel a part of what was happening to him.

Lastly, Blu's advice for the big day is spot on really. Loads of tips that I could certainly have used at the time! We didn't go off site during the op and the hospital gave us a pager too. We walked around the grounds a lot and tried to keep busy without being too far away, which I think helped.

[Bagpuss30]

geekgrrl, forgot about picking up techniques and chest drain holes! My ds ended up with 4 in total but again, they are nice and flat and hardly noticable now.

[luckymum]

Zoidy, we had feeding problems too, dd had so much gunk added to her feeds that you could stand a spoon up in it. She couldn't suck for quite some time so had an NG tube. It will improve post surgery and your dd will soon put some weight on.

Do you live close to Glenfield? If you won't be able to (or don't want to) go home at night remember to ask about a bed as soon as you get there as you won't be able to stay bedside whilst she's in ITU. ITU can be pretty scary at first even if you think you've prepared yourself but try not too worry too much about the vent and the wires, the staff are brilliant. Good luck

[Wallace]

Dd's scar looks great - just a thin white line.
Her skin incision was across her chest (the rest done in the normal way) This was just for cosmetic reasons.
Here are a couple of photos when she was 4 months post op
password: mumsnet

You can hardly see her scar!

[Wallace]

In case you can't see it - it is about where the bottom of a bra line would be, it looks slightly red.
You can also see two chest drain scars (she has 3 and a pacing wire scar) which are faint short horizontal lines a bit lower than her scar.
I do have more photos somewhere which I will attempt to scan on at some point.

[Zoidy]

Hi Everyone,

Thanks so much for all your experiences - it has been a real help to me to hear it all. The thing about picking them up is a little frightening - I always hold her like that. I have been noticing how often I hold her under her arms and its all the time. It must be difficult to not to do it. Is it still ok to support them under their arms - like when she's sitting up she needs a bit of support?

Thanks very much Wallace for the photos -they are great - she is gorgeous! And you are right about not really being able to see the scars. I was also really interested in the fact that she had a different incision and am going to ask whether my surgeon can do that. I had also not thought about chest drain scars so thank you all for telling me about them - at least they won't be a surprise now!

We live about 30 mins from Glenfield so we are going to be staying over - had not thought about beds outside ICU. All these things to think about.

Thanks Blu for all the ideas on who to talk to about what - I imagine it will get a little over-whelming so its good to have thought about these beforehand.

I had a phonecall today to say that her op is likely to be two weeks tomorrow. It seems really close which threw me a little - have had a little cry as expected. But I keep telling myself at least it will be over soon too.

Thanks again for all your support and messages - they have all really helped - sorry to sound like a mushy oscar speech but its true!

Z xxx

[Wallace]

Glad you liked the photos (she is gorgeous even if I say so myself )
Her incision is great isn't it - she will even be able to wear a bikini without any one seeing her scar. It has left her chest a bit of a funny shape though (pigeon chest), but as her breastbone was opened the normal way, this probably would have happened anyway. The other thing is that the surgery took longer than it would have with a straight forward incision.
Do ask your surgeon about it - I think the fancy name is Transverse Sub-mammary incision. Dd's surgeon didn't even give us an option - he just told us he was doing this incision. I think he probably wanted to practice on a "simple" operation (dd had a VSD).
Also about the picking up thing - you get used to it so quickly. I found I was picking dd up the safe way for weeks after it was necessary!

[Wallace]

Just noticed you have a date...thats the scary part...
In some ways we were quite lucky - after all that waiting we were phoned at 4 o'clock on the Tuesday afternoon to say dd's surgery was going to be Thursday, and could we be at the hospital on Wednesday morning! We were in too much of a panic to worry so much!
Hugs to you all - the next couple of weeks will be very hard...

[tayroo]

Hi Zoidy

Sorry to hear about your DD.

My DD doesn't have a heart condition but I was born with one - 30 odd years ago. I'm now a healthy, active mom who goes to gym and lives a pretty normal life. I do get more tired than most other people so I just have to slow down at those times.

I spoke to my mom regarding your situation and she told me that I was pretty sedated most of the time but that both my parents could go in and touch and hold me.

I am sure your little angel will know you're there so don't worry too much about that. Today, they are so advanced compared to my op (done by a very famous cardiologist by the name of Chris Barnard) so I'm sure she'll be in safe hands.

Please let us all know how it goes.

[Zoidy]

Hi All,

Have now been told its likely to be 3 weeks away not 2! Feeling frustrated and annoyed- started to prepare and now they've changed it again - typical.

I will definitely ask the surgeon about the Transverse Sub-mammary incision Wallace as it does look better.

Other than that I am just pacing the house waiting for news - trying to be normal but its so hard.

Will let you all know soon.

Z xxx

[luckymum]

Zoidy - sorry you've been cancelled, it must be awful with everything on hold again.

One of the other mums on the Heartline board has been cancelled too at Glenfield. There's a shortage of ICU beds so everyone's probably been bumped on a week.

[Wallace]

How are you all doing?

[Zoidy]

Hi All,

Still no date so just killing time really! Freya still ok although now has a cold so probably a good thing that we aren't doing it now.

Will let you all know when I do - thanks again for your support.

Zoidy xxx

[eidsvold]

my dd was born with a complete AVSD ( holes in the heart) she underwent two open heart surgeries ( in the end) at 8 weeks old. She was a ditty thing about 8lbs...

She took about three weeks to recuperate with some setbacks ( not typical of this surgery) - she is now a healthy 2 yo who was given the all clear earlier this year - cardiologist said her heart was just like a 'normal' one. We also visited a cardiologist here in Aus after our move and he too was very pleased with everything.

We were able to do little things for her whilst she was in ICU, once she was moved to the ward we were able to do a lot of her care. She did not have a bath for a few weeks until the stitches had gone.

dd was fed via nasal gastric tube until her surgery - post surgery she took the the bottle with great gusto ... we had not problem with weight gain etc.

As someone else said they have lots of tubes and wires coming from their body at first - which can be shocking to see. She was also cooled and sedated - so out of it for a few days - from memory her surgery was a wednesday and they tried to warm her up and bring her back to 'normal' on a friday - so she was out of it for about two days.

There were fabulous nurses called cardiac liaison nurses whose job is to support and liaise with parents - they are very supportive and helpful. Great listeners too.

Not sure what else you would like to know. For me the hardest thing was taking her down to be anaethetised... and watching her be put under. We were able to carry her down to the theatre and wait for her to be put under. When she was under we had to leave so she could go into the theatre.

[Zoidy]

Thanks for that - I had notrealy thought of all the wires or taking her down to surgery but now at least it won't be too much of a surprise.

we now finally have date - friday 8th october, so only a week and a bit to go.

Bit scary but also good to know it will be over soon.

Will let you all know how we do, thanks again for your messages.

Zxxx