Great Ormond Street

[Lil]

Has anyone any experience of it? My little one may be referred there tomorrow, and am worried about staying so far from home when I have a toddler to look after. To be honest I am terrified for my dd, as she has been ill for some time now, and our local hospital can't do anymore at this stage. Haven't mentioned it on mumsnet, although I wanted to, but am biting the bullet now!!

How do mums cope with a sick child? I can't think about anything else, it makes me sick with worry, and I feel like I've only got one topic of conversation as nothing else seems important! Help!

Lil, I'm so sorry to hear this. I haven't been in that situation so can't really help I'm afraid but I very much hope it isn't anythng serious.

Lil
No advice I'm afraid as I have never been in your situation - just lots of virtual support. A very good friend of mine is a nurse in the GOS oncology dept. She is the nicest, kindest and most dedicated person I know, and she says all her colleagues are nicer than her so you will be in good hands.

Lil, I don't have a sick child, but I've met some of the people at GOSH through work (med. journalist) who were just as supportive to parents as they were to the children..as well as the nurses there are trained play therapists to help keep young minds busy and stop them getting too down - or even just to help them express their emotions when they are down. they were professional but very human too - something I've seen in lots of paediatric consultants too, I think because they're used to explaining quite complex issues in a gentle way to frightened children and parents. I hope they can help your dd, thinking of you

I must admit, surprisingly, I haven't found our local hospital children's nurses very supportive. They clearly love the children and are good with them, but they don't seem to know what to say to the parents. I was made to feel like a spare part and a nagging parent, when all I wanted was to be filled in on what was going on. I had to stay 24/7 with my dd, as she's so little, and it was like I didn't exist while I was there. GOSH sounds very different, they must be given specific training to cope with us worrying mothers!

I think so Lil, I talked to some of the play therapists who work with older children eg an 8 yr old who was having chemotherapy. they plan all sorts of projects with them and did alert to the needs of the parents, when they needed a break etc. I hope that's the case with you. Is she going to be in for a while or just for visits?

Thanks SueW, its helpful to know I'm not the only one! Has your dd recovered well from her op, did you write about it on mumsnet? How old is she? mine is only 6 months, and all the tests etc they undergo seem so much harsher on a babe. I live just outside the M25 so I would be expected to 'commute' as it were, but it will take some planning. My poor ds is feeling left out of it as it is. I will ask about surgeons coming locally though, its an interesting thought. Did you find you had to ask the medical team lots of questions, or was everytning made quite clear? I do feel like I'm pushing all the time, its just that everything seems to get done so slowly and there seems to be little eedback with no instant cure.
And Sue, how do you feel now?

Hi Lil

I am so sorry to hear that your dd is ill. My dd was really and very suddenly ill at 7 months I've never been so scared in my life. We went to my local A&E in N London for diagnosis and then 4 hours later were transferred in ambulance to GOSH. They were FANTASTIC!!! The staff were friendly and professional and made sure we knew everything that ws happening. They let us parents sleep in the room. It's a really "cosy" hospital with childrens drawing etc. If you've got to go to hospital then it don't get much better than that.

My daughter has been an outpatient in GOSH and they are wonderful. I think every other paediatric department should go and learn some lessons from them. The staff are wonderful, and as it is only a children's hospital they have an abundance of toys and art supplies in every area, loads of private breastfeeding area if you need them. It is completely geared around making the children and their parents feel relaxed and happy. I think if you are an in patient and travelling from a long way they even have flats for you to stay in , though probably limited in numbers. Hth.

Lil - my DS was at GOSH last year for a major op (it was 'planned' so we had plenty of time to prepare), he was in for five nights & then, unfortunately got an infection so after one night at home we did have to return for a further five nights. However, the hospital was FANTASTIC - looking back, & I know this sounds odd but it really was an amazing experience, the care & support we received was really wonderful, nothing was too much trouble. Also the support from other parents is so inspiring, even when their child is in a much, much worse situation.

I am sure you could stay if you wanted to; we were told 'officially' that only one parent could stay but in the event we were offered a campbed as well as the sofa bed (very comfortable rooms with bathrooms etc); although my DH only stayed one night. They offered my mum a camp bed as well when she came to visit! After the op. the nurses encouraged DH & I to go out on our own to 'give us a break'. I was still breast feeding and a specialist came to see me every day to offer any help.

I really can't praise them highly enough; the doctors were really easy to talk to - our consultant had even postponed his holiday to fit our DS's operation in, as apparently he is the only one there who can do it.

If it would help, please contact me via the moderators & I would be happy to talk to you more about it - use Lindy1.

Good luck.

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No experience of GOSH, Lil, but was at NCT classes with one of their doctors and she was a wonderful person in whom you would feel utter trust - before she had even been a mother herself. As others have said, you will all be in the best of hands.
If it turns out they can accommodate you as a family, there is a splendid playground called Coram's Fields nearby where you could take the toddler to let off steam. It's a very special, child-friendly corner of central London.
Hope all goes well for you there.

Don't want to hijack your thread, but my daughter has also been referred to GOSH, pending the results of her brain scan that was carried out last Monday. I have got an outpatients appointment at my local hospital this afternoon at 2 pm so they can check her development (after failing her 8 month development check - she is now 11 months) and they will tell us the findings of her brain scan then. Nothing obvious showed up last week but they took so many films of the different layers of the brain they couldn't tell us for certain that everything was okay last week.

I have received a letter that my hospital has written to GOSH referring her to a cranio-facial consultant there, Mr. Richard Hayward, but obviously this is pending the results of the brain scan.

The way I think of it is that she will be in the best hands as GOSH is well renowned but I also have two other children, no husband (left me when babe was 11 weeks old) but that will be a bridge I have to cross as and when I need to.

Hi Lil,

my dd stayed in hospital (in Leeds) for six weeks when she was just over a month old and her big sister was nearly 2. It was hard on our eldest and the best thing for us to do was for dh to take the time off work (I appreciate that this is difficult for many people) and together with my parents-in-law we took turns looking after our older one whilst also commuting to the hospital (1 hour away). We tried to ensure that her routine wasn't altered as much as that was possible in the circumstances - she still went to her usual nursery sessions. We also made sure to take her into hospital to see her little sister occasionally, even when the little 'un was hooked up to a multitude of machinery it left our eldest completely unfazed and it was good for her to see that her sister hadn't just disappeared - the staff in intensive care encouraged her to stroke dd which was nice of them. We also showed her our accomodation (the hospital had given us a room and we took turns staying overnight) to make sure she knew what was going on.
On the ward that dd was on they had a playroom with play therapist whose main role was to look after siblings and help them cope with the situation, I'm sure GOSH will be excellent on this as it is a question of funding really and they seem to be well off!
I'm sorry that you are in this situation - it's very difficult, particularly when you have more than one child. Do ask the staff for help and advice! And I hope your dd gets well soon.

Bumblelion - we had the same consultant, Richard Hayward & he operated on our DS - he is marvellous, again, if it helps, please contact me direct via the moderators (use Lindy1).

Good luck to you as well.

Lindy, my daughter has been diagnosed with unilateral coronal synostosis and will be referred definitely to Richard Hayward. My local hospital asked me yesterday if I had had an appointment yet but I haven't. They are now going to write to him again and enclose a copy of Sasha's scans so I should be hearing soon from him.

I will see if I can get your e-mail address direct from the moderators so I can e-mail you in person. Thanks for the offer.

Thank-you, thank-you for your positive responses. Mumsnet really is a wonder. More tests yesterday and today, with no sure diagnosis yet. They are going down a line I really am too scared to even think about - and if I mention it, I feel it makes it real. (OK, what a wuss!!) but until the tests are finished I will not even look up the disease on the web. Now that's pretty good for an internet adddict! Am sure plenty of dead ends have to be reached before we get an answer, and a mother's imagination is very vivid!! At least the stress is relieving me of the last of my post-baby weight!!

Goodluck Bymblelion, let us know how it goes, we could be roomies!!

Dh works at GOSH, it's just full of lovely people who's speciality is sick children. Because it's a tertiary referral hospital they have experience in dealing with stressed parents all the time. It's got it's reputation for a reason, they'll their best for her. Good luck.

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Lil, just want to wish you all the very best. Sorry this is happening to you and hope you soon hear some good news about your little dd. tigermoth x