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Original poster

Great Ormond Street

69 replies

LetThereBeRock · 06/04/2010 22:05

Did anyone watch the programme about GOSH's cardiology department?

It was so incredibly sad yet uplifting, when Aicha's outcome was better than expected.

You can tell how much the children mean to the staff there and that they see them as individuals and care for them.

I have a lot of admiration for them but I don't envy them their jobs. I think I'd barely be able to sleep for worrying about my patients.

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traceybath · 07/04/2010 07:32

I agree Aubergines - definitely worth being informed as a patient.

I found the case review meetings fascinating and loved the fact the dr's still cared very much indeed.

Jajas · 07/04/2010 08:10

This reply has been deleted

Message withdrawn at poster's request.

WorzselMummage · 07/04/2010 08:33

Brian was a wonderful little boy wasn't he, his death really upset me

We are so incredibly lucky in this country to have our NHS. I've always known it but this program last night really reinforced it iykwim.

ihearttc · 07/04/2010 08:41

I saw it as well and literally cried all the way through it. The strengh and determination those parents showed was absolutely unbelieveable and Im so so glad that Aicha's parents fought to get her treated-what an amazing outcome.

The older cardiac doctor,Phillip Rees was just fantastic...you'd really want him as your doctor wouldn't you?

Samstown-Ive bookmarked the page as well and will also donate.

Slartybartfast · 07/04/2010 11:17

and wasnt Aicha such a gorgeous little girl?

saggarmakersbottomknocker · 07/04/2010 12:58

I found this quite tough to watch - having been there, endured it and likely going there again. The issues around consent were very interesting because whilst they are telling you those risks; if your child won't survive anyway you don't really hear them. Then there's a massive high when they come back from theatre and then huge ups and downs as they battle through the complications that you were told about but which didn't register.

Also it was good to see how attached the team got to each child and family despite attempting to view the cases from a purely clinical POV. I think it's really important to acknowledge how brave they are to take some of these decisions. High risk cases don't always do a hospital or a particular surgeon any favours because they influence the death/recovery rates and from a purely statistical POV can make a unit seem unsuccesful. But without doctors willing to take them on these children would have no chance never mind a 50/50 chance.

ExplodingBananas · 07/04/2010 21:38

What a fantastic team of doctors, we need people like that who push the boundaries to help people with similar conditions in the future.

I thought the story of Brian was heartbreaking, he was so scared of being in any more pain.

The only part of the program I was unsure about was when Brian's condition worsened and this appeared to push him up the waiting list despite it looking like he would not be strong enough to survive the op. I was left wondering whether there was another child on the list in need of that heart. I'm glad I don't have to make these life or death decisions.

gagamama · 08/04/2010 07:52

What a sad programme, I really wasn't expecting it to affect me so much when I started watching. I was gasping and hiding and blubbing my way through it. I was so happy that Rachel and Aicha made it against the odds, but was so sad about Blessing and Bryan who the surgeons seemed to have more hope for. Bryans parents were just incredible, his mother said goodbye to him before going into theatre and managed to hold it together and still had time to thank the surgeons. And watching them walk away hand in hand afterwards, resigned to whatever the outcome was going to be. He seemed so scared, bless him. It was so hard to watch him in intensive care. Poor boy.

GreatOrmondSt · 08/04/2010 17:25

Thanks everyone for your kind words and support, it's really appreciated. I know a number of you have said you'd like to get involved in some way, so I thought this would be a good opportunity to tell you about a great family day out we've got planned in Battersea Park on Sunday 6 June. This event is called the RBC Race for the Kids and it will be a 5k fun run to help raise vital funds for Great Ormond Street Hospital Children's Charity. There?s no age limit and everyone's welcome, whether you want to walk, jog or run! You can join up here, or if you can't make it on the day, you can show your support by donating. Here's a link.

Hopefully we'll see you and your families there. Amy x

ToDoOrNotToDoList · 13/04/2010 16:29

I loved this programme. my youngest has just been signed off from the wonderful Phil Rees and I now understand the gentle smile he had for us getting to deliver good news. In his work he clearly doesn't tell many parents that their child has a wonderful clinically normal heart, and I'm grateful every day for hearing that.
GOS is the one place I can go to where my DS2's condition is rare but where they don't look at us like we're from Mars. And where I am spoken to and listened to and not just called "mum" and barely tolerated, as in every other hospital I've been to.
Great Ormond Street rocks. I can't wait to blub again tonight.

Original poster
LetThereBeRock · 13/04/2010 19:38

Wonderful to hear of your dc's positive outcome Todo.

Will anyone be watching tonight? It's the Intensive Care Unit that's being featured this time.

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MudandRoses · 13/04/2010 21:04

Hi everyone
Missed this thread last week. I did look for it, I loved chatting on the One Born Every Minute thread every week! This isn't really the same kind of thing - heartwarming but in a totally different way - but it's myTuesday night 'baby-crack' according to my DP!!
This is going to make me cry again though. What no-one ever tells you before you have kids - you will spend a lot more time and emotion weeping at the tv.

Original poster
LetThereBeRock · 13/04/2010 21:07

I'm hoping this episode shows some good outcomes for the families involved.

I think it's unlikely there'll be many but I appreciate that we get to see the reality of caring for such ill children however difficult it can be to see it.

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MudandRoses · 13/04/2010 21:15

Strange that the mum thinks he's in a lot of pain when he's comatose and not moving.

GeorginaWorsley · 13/04/2010 21:29

I am a paediatric nurse,have been for 20 odd years.
Often I think I cannot do it any more,then something happens and I know I couldn't do anything else!

MudandRoses · 13/04/2010 21:38

You do a brilliant job, so grateful there are people like you!

Original poster
LetThereBeRock · 13/04/2010 21:39

Every time the screen goes black I keep thinking that they're going to say that one of the children died.

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GeorginaWorsley · 13/04/2010 21:40

Thankyou,MudandRoses.

Original poster
LetThereBeRock · 13/04/2010 21:40

How adorable is Uzuoma? She's such a beautiful baby.

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Deemented · 13/04/2010 21:46

You know, i'm watching this tonight and growing increasingly angry. What gives these people the right to decide wether a child should live or die? Surely it should be up to the parents? I know they said the prognosis for the baby born with no windpipe was poor, but to decide not to treat it... and then tell the parents there wasn't anything they could do? Surely they should have at least tried to save him???

MollieO · 13/04/2010 21:49

Reminds me of when ds was born prem and he got the last place in the local hospital NICU because another baby had been transferred to GOSH. Absolute worst time of my life but I will always remember the kindness and support of his nurses. Thankfully ds survived and is now a strapping 5 yr old.

Original poster
LetThereBeRock · 13/04/2010 21:53

Sometimes the right thing to do is to let a child go and the parents aren't always the best people to make that decision though certainly their wishes are considered.

The doctors consider quality of life. If you listened in the meetings there's doctors, surgeons, consultants and an ethics team who make these very difficult decisions.

They explained all the suffering the procedure,which was unlikely to work, would involve for the baby.

Quality of life always has to be taken into account and they have to be realistic about the chances of procedures working. They certainly don't make these decisions lightly and consider the welfare of the child and the family.Sometimes the two are in conflict.

The nurses discussed it too how they feel that at times they're torturing their patients with procedures and care when they know doing so will make no difference, and they wish they didn't have to.

Of course occasionally there'll be an outcome which goes against what the doctors predicted but it's extremely rare.

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traceybath · 13/04/2010 21:53

I find the whole ethics stuff very interesting - such difficult decisions for all involved.

Georgi - I think what you do is amazing. DS2 spent a week in NICU and the nurses were just utterly amazing.

DuncanDisorderly · 13/04/2010 21:55

I should turn this off. My babies were born at 23 weeks and I'd hate for them to face a lifetime in hospital before dying.

traceybath · 13/04/2010 21:55

LetThereBeRock - I totally agree with you and think you expressed that brilliantly.

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