Switching hospitals??

[Olivias_mum]

hi Olivia was born at saint marys hospital and then transferred to tameside, since coming home she has been having episodes during her feeds where she chokes, gags, turns blue etc. We have asked the NICU staff, her GP, HV, pretty much everyone we can think off for advice and all we are told is to pat her back and if she doesnt come round in a few minutes to ring an ambulance. Everyone has queried reflux but never tested/treated it! I have also been told that she might just grow out of it, well it isnt getting any better, in fact t is getting worst. She is desaturating lower (we dont have a sats monitor but i have learnt to tell by looking at her), she is taking longer to come round and it is happening more frequently. I was wondering if it is possible to get her seen at saint marys as she was born there??or if i will have to wait for her clinic apointment at tameside? i dont particularly trust tameside hospital and never really wanted her transferred there in the first place. The lack of faith i have in them has been highlighted by the lack of help i have been given regarding Olivias feeding. Can i request she is seen at St marys? Thanks x

 

[Laura2919]

My girls were born at St Georges hospital and immediately transferred to William Harvey and then back up to St Helier. St Helier are the ones who have taken over the care of the girls but St Georges still have a record so I am able to take them to both hospitals. Although I tend to take them to St Helier because they were the ones who cared for the twins the most and also its where all my consultants appointment is.

I would call them and explain and see what they can do.

Is she being sick after feeds or just choking?? I know people have suggested it but have you tried a slower teet or a thicker milk?? Sometimes it can even be the bottles??

Hope you get something sorted soon xx

 

[Olivias_mum]

hiya no shes not being sick shes just choking/gagging, i have tried every teat i can find-we tried the slow flow ones but she couldnt get enough milk out (ony managed to get 5ml in about 20 minutes) n she still choked!so it cant be becase of the flow! I dont really know how to thicken milk to be honest??sorry if that sounds really stupid!

 

[Laura2919]

No, It doesnt sound stupid. What milk is she on? Have you been to your doctors, I am no expert so I might be suggesting something completly wrong but I see a few of the other parents here suggesting milk thickeners. Maybe ask about them.

How does she lay when your feeding, Is it completely flat? Maybe she needs to be propped up a bit?? Obviously your her mummy so you know the way you do things.

xx

 

[Olivias_mum]

we sit her so it like she is sat up when she feeds (upright) as we were told this should help, we have tried feeding her on her left side which the nurses also said might help but she just seemed to spill the milk out of the side of her mouth and still choked!I have asked every doctor i can think of for some kind of help! (family doctor, olivias paediatrician, nicu doctors etc) and we just get told to pat her back and ring an ambulance/do CPR if she doesnt come round in a few minutes xx

 

[Olivias_mum]

im gonna have to try thickening the milk!will have to find out how to do it!

 

[Laura2919]

I think you get it on prescription the milk thickener. but like I said I am not sure. Clearly something is not right because you have tried everything.

Let me know how you get on x

 

[Marleysgirl]

I've got an email contact in St Marys NICU and I've written to ask her about swapping your follow-up care, but she's on holiday, sorry!

You mention the HV, but did Tameside discharge you without any subsequent NICU midwife care? Andrew was under the Outreach Midwives for 6 weeks after discharge.

 

[Olivias_mum]

hiya thanks alot for emailing your contact in nicu, hopefully might be able to sort something out when she gets back from her holiday!Tameside doesnt have a community neonatal nurse and when you are discharged from NICU you dont see anyone apart from the HV unless your baby has been sent home on oxygen. Bit crap really!

 

[Marleysgirl]

hiya thanks alot for emailing your contact in nicu, hopefully might be able to sort something out when she gets back from her holiday!Tameside doesnt have a community neonatal nurse and when you are discharged from NICU you dont see anyone apart from the HV unless your baby has been sent home on oxygen. Bit crap really!

Wow.

I thought it was standard practice - if you have a term/non-NICU baby, you get a few days of Midwife care at home before they sign you off and hand over to the Health Visitors. So, on leaving NICU, Andrew had the same level of care, but this time under the NICU Outreach Midwives, before they signed off to HV. And in his case, the time was extended until they were satisfied with his weight gain, about seven weeks in total.

I am really surprised that this isn't standard practice? (Manda might now, she's in the biz!)

It also meant I had somewhere to phone when I wasn't sure about things, I called St Marys radio room and could be put through to any of the outreach midwives on duty or even their boss! Which I did, once.

I really, really feel for you. You must feel completely left in the lurch. I'm beginning to realise just what good post-natal support I've had.

ETA. I've just edited a midwife on our research floor regarding this - not for practical help, but to ask if there are minimum standards of care. She's a pal and owes me a favour! And I did it without admitting it was Tameside.

 

[Laura2919]

hiya thanks alot for emailing your contact in nicu, hopefully might be able to sort something out when she gets back from her holiday!Tameside doesnt have a community neonatal nurse and when you are discharged from NICU you dont see anyone apart from the HV unless your baby has been sent home on oxygen. Bit crap really!

Wow.

I thought it was standard practice - if you have a term/non-NICU baby, you get a few days of Midwife care at home before they sign you off and hand over to the Health Visitors. So, on leaving NICU, Andrew had the same level of care, but this time under the NICU Outreach Midwives, before they signed off to HV. And in his case, the time was extended until they were satisfied with his weight gain, about seven weeks in total.

I am really surprised that this isn't standard practice? (Manda might now, she's in the biz!)

It also meant I had somewhere to phone when I wasn't sure about things, I called St Marys radio room and could be put through to any of the outreach midwives on duty or even their boss! Which I did, once.

I really, really feel for you. You must feel completely left in the lurch. I'm beginning to realise just what good post-natal support I've had.

ETA. I've just edited a midwife on our research floor regarding this - not for practical help, but to ask if there are minimum standards of care. She's a pal and owes me a favour! And I did it without admitting it was Tameside.

We didnt have an outreach team either. We only saw our HV and when the twins were 6 months they see a consultant but in between they never contacted me at all!!

I think its a bit terrible. All hospitals should have thatx

 

[Marleysgirl]

I've had a response from my friendly research midwife, and I'm going to post it here as it contains information that might be useful to all. I've sent Olivia's Mum a PM with the entire text so that she has local info.

Unfortunately for most of you, it would seem that I am lucky in what I've experienced.

Unfortunately the delivery of care can differ amongst different primary care trusts (PCT's). Central Manchester has outreach midwives, but women who live 'over the border' in a neighbouring area don't received the same care. It comes down to resources!

If your friend has concerns over her pattern of care and feels abandoned she can contact her local Supervisor of midwives (SoM). SoM's are advocates for women and midwives and are their to support women and promote the well-being of mothers and babies. If your friend phones the trust where she delivers and asks to speak to a supervisor of midwives she will be put in touch with one.

NICE produce guidelines about all aspects of maternity and these can be accessed through the NICE website, but these are only guidelines each trust implements them differently.

<snip mention of local Sure Start>

I'm really pleased you feel you received good care, everyone should receive the same standard of care.

 

[bumpsmum]

once Matthew was discharged we never had any outreach team just local HV we could still contact NICU if we needed, but it was not needed.

I really hope you get some help soon, terrible no one is looking into reflux etc as you would soon know if gavisgon or ranitadine worked! Have you tried any over the counter aids like infacol? xx

 

[Foogirl]

We had neo natal outreach when we came home, but they had only just started it. It was brilliant - plus we could call when we wanted to.

I thought the NHS patients charter gives you the choice of which hospital you are treated at, as long as they have the expertise.

I'd take her to A&E at the hospital you want her to be seen at and take it from there. If you feel the care you are being given isn't good enough, you are certainly entitled to get a second opinion. I really am amazed at the advice you've been given, it just seems so extreme.

 

[Marleysgirl]

I thought the NHS patients charter gives you the choice of which hospital you are treated at, as long as they have the expertise.

It would seem this is correct - I've had a reply from our NICU sister, and she says:

Your friend can ask her GP to refer her to any hospital she wishes. As she is no longer a Neonatal she needs to ask for a referral to The Children's Hospital, not St Mary's. Hope that helps.

 

[Foogirl]

It would seem this is correct - I've had a reply from our NICU sister, and she says:

Your friend can ask her GP to refer her to any hospital she wishes. As she is no longer a Neonatal she needs to ask for a referral to The Children's Hospital, not St Mary's. Hope that helps.

I thought so - we were given a similar choice when I was pregnant. We could choose where we gave birth.

Edited to add - I meant "we" as women generally, not "we" as in Mr Foo and I - I hate that whole "we're pregnant" malarky!!