Shielding a new born

[stanley10]

I’m expecting a baby with DiGeorge on 5th June and have been told he will be on the shielded list (though we can’t register for supermarkets etc. Until he’s born).

Does anyone have any advice as to how to manage? This is our first baby so we are pretty nervous anyway. Have spoken to the GP and looked online but it’s all pretty useless and everyone seems to be making it up as they go along! TIA!

The good news is that with a newborn you'd probably have been staying in anyway. Stay home, enjoy all the cuddles, rest. Tiny babies don't need to be outside so he won't be missing anything.

It's obviously a shame that your friends and family won't be able to visit, but you can video chat and send lots of pictures.

Is your DP working from home?

I’ve not shielded our newborn.. no-one has ever told me I should do. Nor am I particularly worried. We’ve been going out for a daily walk since she was born.. ive never considered we might be able to get priority slots for shopping! Or is it because your little one has an underlying condition that makes them vulnerable?

To be fair, as the above poster, you’ll be exhausted, recovering from labour & working out how to look after your newborn. It’s quite nice to have nowhere to rush off too, not having to keep your house mega clean for visitors etc! And to just rest & enjoy your baby. 🥰 Sadly, my newborn is my second child & I also have a hyper toddler to look after. So no rest for me. In fact, a lot less time with new baby than I’d hoped as DD1 would normally be at nursery! 😫

You will still see a midwife 2 or 3 times after discharge from hospital & then I had the choice of the HV coming out to see me around 3 weeks or I could just chat on the phone. Being my second child, I opted for the phone call. They won’t abandon you, there is still so much support out there. It’s just not always face to face. But they won’t take any chances with a newborn. If they need to see them for whatever reason, they will. My midwives & the HV have been great.. my baby has tongue tie but nowhere is performing the procedure to cut it at the mo, so they’ve been helping me with feeding & the problems we’ve been having!

Is there anything in particular you are worried about?

Is there anything in particular you are worried about?

As per the initial post, I would think that she is in particular worried that her baby has DiGeorge syndrome. Amongst other things this means an absent or poorly formed thymus, which impairs the immune system.

The honest answer is that we don't really know yet how Covid19 interacts with all sorts of immune problems, so it's far better to play safe and shield. With time it should get clearer, but it must be a very worrying time until then.

Thank you for your posts! Dp was about to start a new job when covid hit so the offer was withdrawn. They are making fairly positive noises that it will be put back on the table. For now though he will be at home which is probably a good thing. If he does end up going into an office we might consider me going to my parents’ or something, though that would be quite hard. The gp said to ‘do as much as possible’ to protect (ie only one of us going out, making sure the other showers when they come in etc) but I think if we don’t do the absolute maximum I will be quite worried and guilty.

@Bol87 what @nocoolnames said is spot on. The baby has a thymus which is good but it is small. He’s likely to have a very low T cell count and also has a (thankfully not really serious) heart condition. From what I’ve read they can’t reliably say how good his immune system is when he’s born so it’s best to err on the side of caution.

You'll be worried and guilty whatever happens, welcome to parenthood

It will be really nice to have DP home. When he goes back to work, press hard for him to be able to work from home if at all possible. Don't just accept if they say no initially. This is likely to be a long term problem and he can't not be able to see his child.

Hey! We are shielding our son who has 22q.11 deletion syndrome, also known as digeorge syndrome.
We are however now going for walks remotely as it's too long for a 7 year old to not burn off any energy.
My sons immune system is pretty good now but as a baby he did pick up bugs pretty often.
Tbh bit much advise other than hope you're ok and join the max appeal members Facebook for support it's great xx

Is there anything in particular you are worried about?

Have you actually read the opening post ?

Have you actually read the opening post?

Insulting to the OP, isn't it?

To be fair to the previous poster. I have never heard of DiGeorge before either and assumed the OP was autocorrected. I am sure the previous poster wasn't being rude.

Thanks everyone! We have actually now had the baby who is doing fairly well though still in special care. @zdjg thank you for posting! I’ve just joined the max appeal group. How is your son doing these days if you don’t mind me asking, and how did you get diagnosed?

A doctor at kings today actually said for a new born that complete shielding wasn’t more necessary than for another baby necessarily. He will still have my immunity until 3ish months and then may start to develop the immunity problems typical with 22q. I feel like it’s better to be safe than sorry obviously but there is so much conflicting advice. Plus we live in a small flat with no garden and I think there are obvious benefits to having the occasional bit of fresh air... difficult.

Congratulations! :) Hope you’re both doing well!

The immunity for three months is good news. We'll know a lot more in three months about Covid, we've already made such great strides.

So take direction from the specialists and try not to overthink the situation with Covid. Just enjoy your time with your newborn as best you can. Getting out for a walk brings so many benefits.

Congratulations and try not to worry. Eat well and take baby for fresh air. In the past oh many moons ago, babies used to be kept in for months - to prevent them from catching all the diseases going around. It's still that way in some cultures. I guess, just keep to the lockdown rules from a couple weeks ago, no-one else to hug baby, definitely no kisses, a walk or two a day and a calm home. You don't need to be told really. Just keep you healthy and keep your baby safe.

@thenamesarealltaken yes that’s exactly what he said he actually. Basically that he wouldn’t introduce him to anyone with a cold but he would say that to all new mothers.

He also said the baby can meet grandparents if they’ve been isolating which is such great news. I think we’re going to do that when it’s allowed (I’m so not up on changing regulations these days as have been in a hospital bubble) and try not to feel too guilty about it.

Congratulations!

@stanley10
Ah huge congratulations. We didn't find out about my sons diagnosis until just before starting school so he was almost 5. However it made sense as to why he had a few different health conditions from birth (umbilical hernia, undescended testes, breathing difficulties, struggled to feed, speech delay)..to be honest the first year was pretty hard especially because we didn't have a diagnosis so I was made to feel a bit of a worrier whereas my concerns were justified after we received his diagnosis.

However he's now 7.5 years old and absolutely thriving!! Signed off speech therapy, he still gets coughs/colds more often than others however no longer really poorly from it and I would say this massively improved after toddler age.
He's just like any other child his age... he does find certain things hard to process and can get emotional if things don't go exactly to plan but nothing major.. he's at mainstream school (once they reopen and it's safe) and he's where he should be for his age! His memory is amazing and he is the kindest soul!

Huge congratulations!

My 1 piece of advice would be... see past the diagnosis because some will tell you'll hell struggle with this, that, etc however they don't all struggle with the same and most people seem to have very differing symptoms... many adults don't even know they've got it, it's such a varied diagnosis. X

@stanley10 oh and regarding the shielding... I've now thought it's no different going for a walk where someone is 10m away across a field than it is to be in our garden with our neighbour in their garden at the same time. That's great they've said you can meet grandparents. X

Congratulations OP! In terms of taking your little one out, if you have them in a sling or carrier that can feel a little more 'protected' than a pram - less chance of people peering in or stroking a cheek! I remember being anxious about taking dd out (she has down syndrome and was born at 36 wks - just felt more vulnerable, despite no Covid-19 at the time) and found the sling really helped - just check on minimum weight limits, some are fine from 6lbs.

Thanks @pinkpip100 that’s a great recommendation.

@zdjg I’m so glad your little boy is doing so well. I can imagine it must’ve been really hard not having a diagnosis. Pregnancy was such an anxious time but now the boy is here I’m so glad we knew before then - and so much less anxious now that I can see him (before he was born all we knew about him was this diagnosis). It’s probably partly hormones but I feel so much more positive about the future now! And agreed re all the horror stories. Google for me for the last 4 months has been absolutely horrible for my mental health!