How to cope with uncertainty: child with chromosomal problem

[stanley10]

I posted a few times when I was pregnant. Our little boy was diagnosed with Di George syndrome in utero.

He is now here, 8 weeks old and doing really well. The only problem so far is a slight calcium deficiency and a heart problem that is treatable and that we knew about. He is also smiling, following us with his eyes etc

I thought if all of this happened I would relax a bit but I am finding it incredibly hard to not be petrified and thinking about his future all the time. I spend far far too much time googling milestones, checking milestones and scaring myself on DiGeorge syndrome forums. I’m really finding it hard to be grateful and live in the moment.

Does anyone in a similar situation (diagnosed condition, unpredictable, huge spectrum) have any advice around how to be less anxious? I can’t keep living this way, it’s exhausting.

Thank you in advance

I'd make an appointment to chat with the GP. They may be able to give you some reassurance about likely outcomes for DS and may be able to prescribe you with some medication to help you relax and stop feeling so anxious.

And your baby sounds adorable.

Oh bless you it is so hard. Our son was diagnosed with a very variable genetic condition and I cried and cried and couldn't sleep for weeks. Was offered therapy on the NHS which proved fairly useless (though I think my husband got more out of it than me - I believe they can offer phone consultations too). I don't know if this will help, but for me I had to A. Force myself to stop reading everything about my sons syndrome on the internet and remind myself that modern medicine can allow for better and better outcomes these days (and we don't know what discoveries are just round the corner too), B picture my son as falling in the middle of the variable range for his condition, so I could emotionally prepare for some issues without being overwhelmed by them all, and C just keep myself very busy so less time left to sit and worry. So far it's worked in giving me some peace of mind, though I will be honest there are still some better days and some worse. But I am now so grateful for my wonderful, funny pickle of a son who brings me so much joy despite his issues, even though it felt like the world had ended when we first received the diagnosis.

Thank you both. @Infradoug your advice really resonates. How old is your son now if you don’t mind me asking?

I’m going to impose a DiGeorge internet ban on myself and take myself off Facebook.

Sound like a really positive step, well done! He's 3.5 now, and doing pretty well considering his condition.