Not coping

[Fuls]

Hi
I am just looking for a little support and if anyone else has been in my position. My ds is 3 months old and was diagnosed at birth with an asymmetrical smile and has recently had an echo of his heart which showed 2 small holes and maybe one side of his heart is slightly enlarged. The consultant is going to see him again in a few weeks. I am just so worried about everything I just wish I could turn my brain off. I'm concerned he has a syndrome and his life is not going to be "normal" per say. I love him to bits and want him to be ok. I'm a nurse which makes me even worse cuz I think of all the worse case scenarios, I can't talk to my oh has he is just oh everything will be ok camp! I understand there are children out there with much more serious conditions but I'm just going out of my mind how do ppl cope???

[Perspective21]

I couldn't leave this unanswered. For background my son was born with DS and another medical problem which meant NICU and an op within his first 3 weeks, I also had two other youngish children at home. When I look back now, it seems hard to see how I managed without going a bit mad.

What helped me was I did acknowledge that I was in difficult circumstances but I couldn't just cave in, so I sort of filed it away in my head and only viewed the whole picture at night, when I was alone. I would then mull it over, cry and sleep a bit. Then each day, at first I was in hospital with my son, I wrote a list of what needed to be done; so talk to consultant, eat lunch, express milk, deliver milk to NICU and sit with son, phone daughters, make sure they were up to date with school stuff.

I did this when we got home for weeks after too, it really helped with staying calm. Could you just list all your big worries and then do a daily list, ie what needs to be done today to get through and do this each day until you get to the appt. I do think being medical makes it worse as you will be in overdrive imagining things.

I do think it's good news that the consultant has said to see you in a little while, in my experience of me and our friends is that urgent problems are called in very quickly, either that day or 24 hours or so. I do think it sounds a bit less urgent, although very worrying. My son also had little holes on his heart which closed unassisted after a year of monitoring.

Don't google and scare yourself!! I'm wondering if you're putting the facts together and jumping to a syndrome because of your nursing experience. Surely consultant would have mentioned if they'd seen lots of markers?

When you've had the appt, post in Special needs boards as much experience of additional needs and health problems.

Good luck xx

[Fuls]

Thank you for responding.. The consultant does think I'm mad and he thoroughly examined him and did say I was over worrying but I really can't help it!! Worse thing I did was google and it came up with all sorts lol I know I just need to enjoy him everyday and what will be will be but aaaarrrggghhhhhh brain overdrive! Thank you once again

[Perspective21]

It is a very natural reaction to be worrying. I would step away from Google and try very hard to do all your ordinary stuff, I understand that waiting and seeing is very hard. At the back of my mind, all my son's first year I was worried his heart situation may be worse and need more attention than it got. In the end my sister, funnily enough a paediatric nurse, said to me, just look at him, does he look ill? Is he struggling for breath? I had to accept that no, he looked perfectly ok!! I decided that if he became ill and I was concerned, I'd take him to A and E and explain his background...that made me feel a bit calmer and in fact he didn't ever become ill!!

He does have Down's Syndrome but is a healthy, happy, joyful 4yr old boy, living a perfectly ordinary life. It is hard to get your head around medical news, just be very patient with yourself, yours sounds like a perfectly good mother's reaction to me xx

Just try your best to get on and help him grow and you can always come back for opinions when you get more news. Do try to look after yourself too xx