Cleft Lip and/or Palette

[DaintreeDream]

I posted this in a seperate thread but I thought that you ladies may be able to help me :

My DD has Pierre Robin Syndrome (Cleft Palette only and Small Jaw). She is currently taking approx. 50ml orally which takes about half an hour for her to drink, sucking on her own - no squeezing, then the rest of her feed (175ml all up, inc. oral feed) she has through a NGT (Nasal Gastric Tube).

I would like to know how long it 'normally' takes for cleft babies to drink their bottles, I am trying to figure out what the next step it in feeding in order to get rid of this feeding tube!

Should I be squeezing it into her mouth so that she doesn't have to work so hard? She is using a haberman bottle.

Smx83 - do you have any further information on the following that may be of any assistance for me?

I can give you more details if you need more...I just wanted to pass this on to any mums who are struggling with the squeezing method or just want to try this other option as I know that I would have loved to have known this when I was struggling in the early stages! xxx

Also a plate has been mentioned by you ladies, is this something that could help me? Never heard of it, it is only her palette that is cleft, her lip and gum are not affected.

It it hard enough expressing full time, then added stress of trying to bottle feed and tube feed... will I ever get to rest???

Thankyou for your help,
Deanne.

[Nettie]

Deanne - yes you can squeeze the haberman to help her to feed but you must make sure she swallows between squeezes or you'll overwhelm her.

Liam had a plate to begin with, but didn't like it very much and he just figured out how to feed without it. The plate can help by letting them create suction like 'normal' mouths.

Liam sculls his 150 mls sometimes within 10 mins. Usually it's more like 20-30 minutes - just depending on how hungry he is. But I think he's the exception rather than the rule (greedy boy!).

Good luck! And feel free to ask away if you're worried - do you have a contact at your hospital that you can contact? My hossy is excellent and I know I can contact them if I'm concerned about anything...

Ooh - forgot to mention.. We're now feeding Liam 'solids' but are doing it the 'easy' way of adding 1/4 of the 'dose' of rice cereal to his 150 ml haberman bottle. We do this 4 times a day and he gets the same amount - but no spoon feeding! We're going to try him with a spoon soon - just wanted to get his 'system' used to the food first. Should be interesting

[Pretty Butterfly]

Must cleft bubbas will need the bottle sqeezed for for the first few months...its trial and error!!

Just get into a slow rhythum, and watch that she is actually swallowing. She will soon get used to the feeding technique. A long slow sqeeze usually works best when they are little. Trying to get it out herself will be too tiring just yet.

A plate is used to pull a very wide cleft together over a long peroid of time, and is supposed to help with suction. I dont know of any cleft mum's on line or in my RL group that it actually did help with feeding though. If your doc didn't recommend it, I wouldn't worry.

Good luck hon, oh the joys!!!

[DaintreeDream]

Thankyou for your advice ladies.

I have just fed Matilda using the 'long slow squeeze' teqhnique... she look 100mls, yay! Then she started to get a bit restless, I didn't want to push my luck so the rest was fed through her tube.

She is on 175mls, 4 hourly at the moment, if I can get her up to drinking 150mls then I will put her back to 3 hourly feeds and then hopefully we can get rid of the tube! My aim is to remove the tube by her '5 month' birthday, I have about 5 weeks...

Once again thankyou for your advise her oral amount has doubled just like that.

I will keep you updated on our progress.

Deanne.

[Smx83]

Hi there, just replying to your thread regarding the feeding...

When I used the pigeon cleft palate teat I really struggled with it, Taylor who was newborn got very tired quickly trying to drink, I found it very difficult squeezing the bottle every 2nd or 3rd suck and sometimes she would choke if she was not ready, I could not take her shopping because I knew it would take me ages to get her fed, sometimes it would take up to an hour and a half (would have to stop and feed her again when she regained strength to drink) and so I had to find something else for her to use as the pigeon teat was not working for me (the time factor also was just very inconvenient, especially during early hours of the morning!) and I was just very stressed trying to feed her...

I enquired about the traz chu chu easy feed teat at the Children's Hospital in Randwick after about a month of her struggling and not gaining weight, and for me, this teat was a miracle on Taylor, she adapted extremely well, it looks exactly like a normal teat you see in shops, This teat is made of clear silicon. The flat part of the teat acts as a palate. The infant only needs to apply slight tongue pressure to the teat causing the cross cut to open and milk to flow out. The sides of the teats have been made extremely soft. You can buy these teats from Traz Chu Chu (02)4936 4322 or fax (02)4936 4122.

I have just had a look at the packet that the teat came out of and says it was designed for High Palate, Down Syndrome, Pierre Robin Syndrome, Low Sucking Response as well as Cleft Palate.

I found these teats were great and were less stressful at feeding times!

My email address is smx83@yahoo.com.au if you want to contact me for anything!

Hope this was helpful...

Cheers, Sharon

[Pretty Butterfly]

We've been using the new teat for about 6 months, it's been great!!!

We can get them at all the chemists up here, so have a little look!!!

MM, that is awesome babe!!! She'll be off the tube in no time!!!

When bubbas breast feed, after the initial big let down, they get into a long sucking rythum, and I find copying this was the perfect way to use the bottle. I'm so glad it help your little DD!!!!

[annemaree]

hi im a 2nd time mum that has a 10week old baby girl who has a clift palate. I have been to hell and back when i was in hospital (private) when she was not eating from the bottle right and was always being sick through her noise i was told it was cause she was born so small (5 pounds 8 ) and her feeding took over an hour but that cause she was little this was all at the hospital and was never cheaked out by a doc. when we left and got the fist vis at home by maternal nurse told her the same thig and got the same answer went to to got told she had a cold and that some babys are sick though there noise, this went on for 8 weeks then 1 day when she was crying i notices the back of there throt and top of mouth went back to doc and got referal to paediatrician now seen the paediatician and have been told that cause the hospital didnt pick it up i now have to go on a wating list to get into monash hospital and this is not good enough and no one will see me to help me cause they dont want to step on monashs toes

[DaintreeDream]

Hi Annemaree,

Welcome to Bellybelly, my daughter was born at the monash and we transferred to the Royal Childrens 10 days after she was born. Have you thought of contacting the Childrens to see what they say? I have a team of many kinds working with my daughter including plastics - they are the ones that will be fixing her cleft at 18 months (later than normal due to her having a small jaw), 2 speech paths - 1 for feeding and 1 for speech etc later on and many more for the remainder of her condition. We were there for 11 weeks and although I am still having alot of difficulty feeding my daughter they have been great support and offer regular appointments especially (sp?) the speech path involved with her feeding, unfortunately I think my daughter is a bit slack and a bit of a slow learner, she also has her jaw to deal with. It might be worth a try though? Saves you waiting for Monash? Are you currently feeding her with a special needs bottle, like a Habermann or Chu Chu? If not the cleft pals website sells all types.

If you have any questions of just want to chat the girls here are great and will help out as much as they can

Good Luck.

Deanne.

[DaintreeDream]

Hi Ladies,

Well after my good start Matilda has stepped back a little but still better than what she was doing. Still hoping for her to be off by her 5 month birthday though. She is 4 months today so 1 month to go.

Sharon - I have heard of the Chu chu and I am getting mixed reviews on it, I think it is a matter of every baby being different, I think that I might give it a try. I cannot find one in the chemists in Melb. so I will contact them direct or maybe go through Cleft Pals, I know they also have them. Anything is worth a try at this stage!!!

PM and Nettie- is the chu chu the same bottle as you are using? Have you used a Habermann? I believe Nettie has as she kindly supplied me with extras (thanks again) I am keen to find out what people in here find better to use?

Deanne.

[Pretty Butterfly]

Oh Annemaree, you poor thing.... Firstly you will need a "cleft Palate" bottle and teat, that should help greatly.

And although she needs to be under a specialists care, there are no surgeries for a while.

But she DOES need a speechie for feeding. Get a referal from any doctor, (the hospital should of done this! ) and call a speechie who specialises in clefts.

Explain to the receptionist she has a cleft that wasn't picked up, and hasn't seen anyone yet, and needs someone NOW.

You will also need a referal for the Plastics team, and that one will cover all the other people she needs. There will probably be a waiting list, but she needs her speechie immediatly. Good luck honey.....

MM, I have used the Cleft Pal bottles and Pigeon Cleft teats, and can now use the Chu Chu teat on any bottle...

The Chu Chu has the bubba push thier tongue "up" into it, and the milk comes out. So it also helps with tongue placement, which in turn will help with speech. She may be a little young to use it, not sure though.... Kane didn't use it till around 9 months....

[DaintreeDream]

PM - I am going to give the Victoria Cleft Pals feeding support line a call tomorrow and see if they can offer any helpful advice on bottles/teats. I might just get a chu chu and see how it goes, I am a bit confused however as they have a chu chu easy feed teat for $14.59 and a chu chu cross cut teat for $4.95 then the squeezy bottle for $7.85 - not sure which teat and also if I need the squeezy bottle or not??? I assume the more expensive teat and a squeezy bottle.

I saw in another thread that you are changing the kiddies over to cloth, how is your quest going? There is so much to take in... and so hard to know what you do and don't need! It took me a while but I got there now my DD is happily cloth bummed!

Deanne.

[Pretty Butterfly]

There are a LOT of Chu Chu teats!!!

Only one has "for high/cleft Palate" on the back, and up here it is $20. You will need a sqeeze bottle for as long as she needs it sqeezed. If she works out the Chu Chu teat herself, any bottle will work hon...

I have 11 cloth AIO, One Sizes on the way, 5 different brands. I cant wait to work them out!!!!!


ETA.... I think the teat is called a Traz teat??? I cant remember, but it will be on the back of the little box....

[annemaree]

Hi there every one thank you so much for all your help i have now got a apponitment to see a s/p today at frankston hosp yeh it is great to know that im not the only one out there with this problem i feel so much better i will let you all know how i went today and i will ask if it would be quicker to go to the rch than monash i hope all your day is good thnk you so much annemaree

[Pretty Butterfly]

Oh hon thats great!!!!
They'll sort all her feeding issues for you hopefully....
Good Luck...

[Smx83]

Hi Matilda's Mum,

The particular teat that I am using is called a Traz Chu Chu Easy Feed Teat, that is the name of the teat I am using....not aware of any other chu chu teats but I'm sure there are some....like you said every baby is different and while some may pick up on it, others may not and prefer the pigeon teat....it is definately worth trying it if you are still unhappy with the way her feeding is with the feeding methods...have not used the Habermann but would have been the next option if this teat did not work....I used the Traz chu chu teat on Taylor when she was about 4 weeks old and she picked up on it straight away...like purplemamma was saying she can use the chu chu teat with any bottle, not necessary just a squeeze bottle, I find that so much milk comes out easily without squeezing the bottle so you could use a normal bottle, just replace the "normal teat" with the chu chu teat and should be fine, the only thing is that sometimes it leaks but I have not had any problems with our bottles.

Yes, give Cleft Pals a call or those numbers I gave you on the previous blog, they should be able to assist you

Annemaree - I really understand how you are feeling, Taylor's cleft was not picked up until a few days later when I was in the hospital, none of the midwives picked up on the cleft palate, because it was so far back in her mouth I guess they just never noticed it or considered that was what it was, it was not until I contacted a breastfeeding specialist in the hospital who tried to assist and then a speech pathogist was contacted after Taylor had no food after her 3rd day....it's amazing that you had to go through that much time before her cleft was picked up! I remember feeling very nausous when they told me what she had (I had the 3rd day baby blues badly) but at the same time was relieved that there was something we could do....

I am so glad there is a website like this where we can all support one another and everyone has been really helpful to me and I'm sure to all of you's too! I'm very thankful!!

Have a wonderful week and hope Anne Maree that your appointment was successful today!

[Nettie]

Annemarie - you poor thing! It's enough of a shock to get a cleft diagnosed - without it coming so far after the birth! We waited 3 hours to find out - that was bad enough! I thought I was doing something wrong with BF!! Hope your appt went well - can't wait to find out!

MM - yes, we use Habermann (haven't even tried anything else - but it works so well for us that we don't need to confuse the poor fella!).

He's doing great. We've started feeding him rice cereal via the bottle (1/4 recommended strength) and hope to start spoon feeding in the next week or so! Wish us luck!

to everyone!

PM - Got a surgery date yet?

[Pretty Butterfly]

No date yet....

Will be calling on Thursday, clinic day, to find out whats going on. Last time we had a about 6 weeks notice.... So it looks like Kane will only be done just before christmas, or maybe next year.....

He needs his grommits SOON, so I'd better find out whats going on....

[DaintreeDream]

Hello Ladies.

I can bearly contain my excitment

Matilda has been drinking between 120-130mls per feed orally for the last 2 days leaving 45-55mls to go through the tube, this was great, but this last feed she had 175mls - the whole bottle - orally

I really do have to thankyou for your support as it seems to have all happened since I spoke with the lovely cleft mummies in here that my DD has started to feed better orally, PM your advise was especially helpful

Thankyou everyone

Deanne.