Forum home Archived Birth Clubs My baby was born in Jan 2011

am Devastated

following my last post, Harry had some more light therapy and his jaundice is well under control, and William had his op and the lump removed, and although not had results of the biopsy the surgeon is confident its nothing sinister.

However, Harry had his check at the doctors this week and she thinks there is something seriously wrong with his eyes.

I had just assumed it was him looking around all the time as his eyes are never still but the doc thinks he can't see at all. We have to go back next week for her to double check but if he still won't look or focus then he will be referred to an eye specialist. I am beside myself and thinking now she may be right as he won't make eye contact as newborns are supposed to do with their mummies :cry:

Replies

  • Oh no hon, how awful for you. Hopefully she'll be wrong and it will be fine. How scary for you.
  • Ah Hun I'm sure everything will be ok.

    A very worrying time for you though

    Xx
  • What a worrying time for you, when is your next appointment? My husband is visually Impaired and works in the field as well, so if we can give you any advice, just ask. X
  • Not sure what to say to you really....just wanted you to know that we're thinking of you and your family and that you get a positive result from Harry's next appointment. xx
  • Oh hun, I really hope it's good news for you! fingers crossed they are wrong!
  • Thinking of you hun... really hope she got it wrong and his eyes are fine xxx
  • So sorry you've not had much of a break with luck. As with everyone else, I hope wee Harry's eyes are grand but you'd be amazed what you can cope with and what science can do if there are some problems. I know we hate to think of our little one's having to cope with anything so saying don't worry is easier said than done but we're all here for you x
  • Sorry to hear about Harry and I too hope that the worry is for nothing and everything works out ok. Although it must be difficult to think straight right now until you find out what's going on, I second what mummychop has said, life does sometimes throw us challenges and in the face of them we do somehow find a way to cope. x
  • Thanks for your messages. Harry's next appointment is Thursday next week and am hoping she is just going to say there's nothing wrong, but deep down I know something isnt right. He just doesnt seem to see anything, and pulling funny faces or dangling a toy gets no reaction, but make silly noises or talk to him and we get endless smiles and gurgles. Either that or I gave birth to a teeny teenager and he's blatantly ignoring me lol
  • Try to stay positive hon, you seem to be even though preparing for what may come. The waiting can be tough but once you know more from the appointment you can become better equiped to deal with things if it turns out that there is something with his eyes.

  • Hi LMS. I havent been able to log on for such a long time but I have been keeping an eye out for an update. I hope Harry is ok. Have you any more news on him? I am sorry to hear that there are problems with his eyes and I really hope that its not too serious xxxx
  • Hi hun, hoping things are going ok for you?!
  • okay devastated doesn't come close. Harry was referred urgently to the hospital for a thorough eye check. He has retinablastoma in both eyes and has to go to Birmingham now for more tests and treatment. There's only there and Great Ormond Street that deal with this as its so rare, only a handful of cases each year. Its been a difficult few days and not knowing whats yet to come is making life hell. Trying to act normally for the other 3 is hard too. We're preparing ourselves for the worst and hopefully it will turn out better. We're jst praying that catching it so early will turn luck our way. Thank you for all your kind words and thoughts, they do help x
  • So sorry to hear this. Hopefully they will have caught it in time. Our thoughts and prayers are with you all. We're always here if you need to chat. Are you on Facebook? Lucy set up a great group page, and it can be easier to contact people on it. X
  • oh hunny you must be in bits just now. thats dreadful news to get. have they decided on a best course of treatment yet? x
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