What would it take to change the system?

i remember after my 2nd's birth, i exclusively breastfed for 6 months. at about 4 months, the doctors were shocked that i was STILL breastfeeding. she said that she thought it was great, it was just REALLY uncommon in hk for mums to feed that long....i also think that locals would be very hesitant to use another woman's breast milk. heck, most of them aren't organ donors either....

I also get praised when I tell the doctors that I am breastfeeding exclusively... But people are not always so bad about doing donation... at least they do give blood... but probably most people are still conservative and think that they should die and be buried or burned as a whole.
 
It is really mystifying why the NICU doesn't promote kangaroo care, because the research evidence is now so overwhelming that it saves babies' lives. My guess is that it is a logistical issue. For mothers to spend many more hours with their babies, there needs to be more provision of seating and/or bedding in proximity to babies. Staff will need training. This might require infrastructure changes within the hospital, as well as cost money to train the nurses, and nurses' routines would need to change a lot. But with enough public pressure, maybe they will realise that this is an important issue and that any money spent will be recouped in the future, because of the infants' reduced need for healthcare expenditure in the future. Does anyone know where would be a good place to start with initiating such a campaign?
 
Hi Nicole

I hope Maddie will be home with you soon. I can't imagine what you are going through emotionally on a daily basis, and then to have the desire to invest emotional energy in 'changing the system'.

I don't really want to invest that much emotional energy in changing the system, but I've spent a lot of time observing the way things happen up there in NICU... and the little one in the bed next to Maddy is about the same age as her, maybe only a week or two younger. The parents are ALWAYS at the hospital, a lot more than I am - they're there when I get there and they're still there when I leave... then they're still there when my husband goes after work too. (must be a first child! If I didn't have an older child, I'd be there that much, probably!!) - but they still have not yet held their baby. Their baby is kept in a box, and they can touch their baby through holes in the side. It's completely crazy, in my opinion...

The baby across from Maddy is probably only about a month old (mustn't have been AS premature as the one next to Maddy) and the parents just held him for the first time this past week...

I don't talk to the other parents, but I observe them... and I "feel their pain" because I'm in a similar situation. But I'm lucky because I can hold Maddy and now I can even bath her... they watch me bath her and I'm sure that it makes it harder for them because they can't even hold their little ones... and I don't think there's any medical reason why they shouldn't be able to.
 
It is really mystifying why the NICU doesn't promote kangaroo care, because the research evidence is now so overwhelming that it saves babies' lives. My guess is that it is a logistical issue. For mothers to spend many more hours with their babies, there needs to be more provision of seating and/or bedding in proximity to babies. Staff will need training. This might require infrastructure changes within the hospital, as well as cost money to train the nurses, and nurses' routines would need to change a lot. But with enough public pressure, maybe they will realise that this is an important issue and that any money spent will be recouped in the future, because of the infants' reduced need for healthcare expenditure in the future. Does anyone know where would be a good place to start with initiating such a campaign?

That's a good point - because there aren't that many chairs there (and they are all the hard stackable plastic kind), and not much privacy if you want to do the proper "skin to skin" kind of kangaroo care which involves opening up your shirt and placing the baby on your bare chest.

I think maybe another thing is, the hospital seems so afraid of infection that parents must wear hospital gowns when holding their children. That's kind of the opposite of kangaroo care!
 
hi nicole

our triplets were born at 26 weeks. we did not get to hold them for at least a month and they never encouraged skin to skin kangaroo care. yes, we were at QMH as well.

i hope your dd comes home soon. i am near to qmh if you ever want to meet up and chat, or if the parents of any of the preemies ever want to talk about the NICU tango (one step forward, two steps back.)
 
This is not only a problem in Hong Kong but also in New Zealand. In New Zealand a group of mothers have got together to lobby the government there and formed a group called NUMB, Neonatal Unity for Mothers and Babies, http://www.numb.net.nz/index.html

I think it would need a campaign like this in Hong Kong to change anything. I realise that this seems like a huge thing to do but remember the quote from Margaret Mead
?A small group of thoughtful people could change the world. Indeed, it's the only thing that ever has. ?

Best wishes,
SARAH
 
Hi Nicole,
When my son was in the NICU (born at 30 weeks he was in the hospital for 50days) I found the nurses were very supportive of kangaroo care but only after he was more stable (I held him for the first time at 17days, before that he would just stop breathing so I think it was too dangerous). I had to be the one to initiate it. We did our research and told the nurses that we wanted to kangaroo care our son. For those 17days we just kept telling the nurses, everyday we would go in and ask "is he stable enough to kangaroo care today?" Given the NICU can get very hectic and there is not a lot of space, we improvised by me wearing a button up front shirt that I could undo easily without having to take off my shirt, placing the baby on my chest, and then wearing the purple gown with the ties in the front. for privacy, i would sit facing the wall. Please share this with the parents in the NICU!! Kangaroo care is completely do-able in HK!! You just have to insist on it and be ok with the lack of privacy. They also may not have milk bank but they are very supportive and encourage moms to bring breast milk in for the preemies, they have a room where you can pump/breastfeed right across the hall, I would often spend the nurses shift-change periods in there pumping so I wouldn't waste the visiting time I had while at the hospital. Same goes for getting there early to pump, you can just buzz in and say you want to pump milk, even if it's not visiting hours.

For new parents, i think it's hard to challenge the hospital but I think regardless of where you are in the world, patients need to speak up about what they want for their health care. A lot of it comes down to liability. They just want to limit the chances for accidents to happen. Going through the HK system, we found that we had to be very vocal and strong about what we thought was best for our son (hard for new parents in NICU, you're just so worried about your baby and don't want to do anything wrong), if one person says 'no', you just have to keep asking and insisting - sometimes sounding like a broken record. we also found talking to the head nurse and getting the Drs to talk to the nurses for us, helped. Once a Dr. has agreed and they write it down in the charts, you will find the nurses will be more helpful - seems like they just don't want to do anything to get in trouble, especially the younger/newer nurses.

The other thing we found was if we were hands on, the nurses welcomed the help. I would always ask if I could do it, be it holding the feeding tube, changing diapers, etc. I would just watch how they nurses did things and then would copy and ask if I was doing it right, in this way we became part of their team instead of a hindrance (for lack of a better word) to their system. They are just so busy in there, especially when its a full house, all those little babies fighting to survive... Things like occupational therapy, when the therapist was there doing the exercises, I would ask the therapist to teach me so I could learn the technique and do it by myself, this way I could make sure he was getting therapy a few times a day versus the once a day that was scheduled. It's tough having a sick child, you really need to become a specialist/advocate for your child.

Glad to hear you're doing ok, hugs xx
 
sorry forgot to mention that we too were at QMH. They have a premature baby support group that the parents can join for emotional support either by phone or in person, this was very helpful for us to hear others' experiences and to find out that the kids were grown and ok now. (Dimsum Mum, thank you to you also for contacting me during those difficult times!!) I am also available to meet up with any of the NICU parents if you or anyone wants to talk.
 
I had a big long talk with the head doctor up there today about some of my personal frustrations and he was SO helpful. Apparently, the visiting hours used to be from 8am til 8pm but they've just been reduced to 3pm to 8pm recently. I can never stay later than 5:30 because I have another daughter who eats around 6:30pm and is in bed by 8. The visiting hours and the "strictness" of everything is the hardest thing for me. But you are right, the doctors do really listen if you're assertive enough... (hopefully they'll be able to work a way for me to be able to go outside of visiting hours because I would love a bit more flexibility in when I can go up...)

My daughter's already been in NICU for over 2 months and we're looking at minimum of another 2 months it seems - so I think given that, they're a bit more "willing" to bend the rules for us...

They have already bent the rules a couple of times - the "best" time was when they allowed my 23 month old in to meet her sister for the first time. But if I hadn't have pushed for that, I wouldn't have gotten it...

I just wish for the sake of new parents that there would be things that were a given rather than something that they have to push for. When I was talking to the doctor today, I mentioned that the system there makes the parents feel more like visitors than parents - and being a generally non-confrontational person (unless really pushed), I wish that I wouldn't HAVE to fight for some of that stuff... and I know that there are other people up there who probably feel the same.
 

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