Premature 22 weeks and 3 day very sick baby

[Ratbag82]

I'm hoping someone will be able to give some advice to me to pass on to my brother and his partner.

Their son (my Nephew) was born yesterday at 22 weeks and 3 days. He's tiny (although a large size for a baby born at this stage).

He is in intensive care where is being helped to breath. His skin hasn't fully formed so is at risk of infection. He did a wee when he was born but hasn't had one since.

He is extremely sick and my brother and his partner are being asked to switch his machines off.

He reaches up to hold their finger and has been moving and responsive.

They are determined to give him every chance at surviving. They feel very isolated and don't know a great deal about what is happening with their son.

Is there anyone who has experienced similar things in their family who might be able to offer some advice?

We are all desperate, but especially my brother and sister-in-law.

I realise this is a very upsetting subject and don't wish to upset anyone but we're all feeling a bit lost. Any advice would be greatly appreciated.

Sorry your family is going through this. I have had an extremely prem baby, but not that early.
Bliss is a premature baby charity, they have a helpline that might be helpful?

Thank you so much PickingPoppies, I shall pass that on to my brother. We don't know what's to be expected in these situations, my three were all full term so never dealt with anything like this before but there doesn't appear to be any counselling or support at the hospital so this advice in brilliant, thank you xxxxxx
Sending my best wishes to you and your amazing baby. I've been blown away by how remarkable these tiny little people are! xxx

My baby was born at 30+6 so afraid I wasn't in same position. I would recommend Bliss or Tommys for advice I think they both have helplines.

I always found it helpful to be on the unit for the doctors/consultant rounds to try and hear their opinion first hand rather than from nurses (who look after the babies).

As a Neonatal nurse, I would also recommend Tommy's and Bliss for advise and support.
Whilst it is devastating to hear, the medical team would not be advising withdrawal of care without good reason.
So sorry that your family is going through this.

Thank you both for your kind and helpful messages. I shall pass them on xxxxx

Another vote for the marvelous Tommys and Bliss

Agree with the others to contact Bliss and Tommy's. I really hope their helplines are open over the weekend.
My dd was born prematurely 16 years ago at 27 weeks weighing approx 700g and so I appreciate what you are all going through. This was considered small (and early) at the time. Although there have been many advances since then, 22 weeks is still (unfortunately) very early indeed and only a very small number of babies born at this stage do survive. Although I hope your nephew may be one of the ones who does make it, I hope that your brother and his wife are given the information and guidance that they need with this difficult decision.

for you and your family op I hope you can find the information and support you need

My son was born at 24 weeks nearly 11 years ago and he did eventually pull through, but it was a long and very rocky journey.

Unfortunately 22+3 is an exceptionally early gestation and, much as I hate to say this and hope I don't come across as insensitive, statistically babies born at this gestation are very unlikely to survive. Having said this, most hospitals won't even give 22 week babies a chance, so it sounds like your nephew is in absolutely the best hospital and has a neonatal team who are trying everything for him. I wish you all the very best and hope that your brother and his wife are getting the support that they need to make the best decisions.

((Hugs)) for you and your family op. I wish you all the very best 💐

How is he??? I had my daughter at 24 weeks and she was discharged with relatively no issues apart from a pda, she did exceptionally well. In the hospital I was in (Portsmouth) I was reading a hospital magazine and it was saying about a preemie born at 22 weeks who had just been discharged so it can and does happen. I hope he gets stronger and recovers, every day increases his over all chance of survival. Xx

Hello Ratbag congratulations on the birth of your little nephew. My DD2 was born at 23 weeks, also cared for in Portsmouth like Sian's DD. Sadly her twin sister did not survive and we had to make the heartbreaking decision to withdraw support.

My heart goes out to your brother and his partner. I do know of some little ones who have made it at very early gestations of 22 or 23 weeks but it is touch and go with these very tiny ones. If they do facebook they might want to join the micropreemie support group there? There are quite a few parents of surviving 22/23/24 weekers who might be able to help and offer support.