Cleft Lip and Palette
Printed From: OHbaby!
Category: Support
Forum Name: Parenting a child with special needs
Forum Description: A place for those parenting children with special needs to find support and share their thoughts
URL: https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=24240
Printed Date: 18 December 2024 at 4:21am
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Topic: Cleft Lip and Palette
Posted By: KateEmma
Subject: Cleft Lip and Palette
Date Posted: 02 February 2009 at 2:36pm
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Hello,
We have just come back from a specialist scan that told us that our wee baby boy has both cleft upper lip and cleft palette. Im currently 25 weeks pregnant and this has come as a shock. I feel very sad and sorry for my baby and am just devastated really. I understand things could be a lot worse but im still getting used to the idea that my baby wont be "perfect" or what we consider to be. Ive seen a previous post and am basically looking for any support or knowledge that will help me work through this and have a better understanding so I can be the best mum i can to my little prince. Look forward to any feedback, thanks. |
Replies:
Posted By: my2angels
Date Posted: 03 February 2009 at 1:06pm
| My son had a cleft lip but not palate and my friends wee girl had a double cleft lip and palate and honestly its not a huge thing... once you get over the 'my baby will not be perfect' thoughts and once you have your baby in your arms you wont even think about it. I know the shock you will be feeling though, I remember it well and its all completely normal. The support you get at the hospitals is amazing, so my advice would be to listen to everything they say and get as many phamplets etc... as you can. if you want to then there is the cleft support network you could join, cant remember thier website off the top of my head but i know its been mentioned on here before so maybe do a search on the subject. After the surgery you will not even notice it, most people have no idea Kobe had a cleft and are surprised when I tell them and my friends wee girls repair is just as good even though she had a double cleft lip. They do the lip at around 3-4 months and the palate is normally done a bit later though. Depending on wether you b/f or bottle feed you will be being heaps on info. because with the cleft they wont have a sucking action you get a special thing to put in the bottle that basically stops them gagging on the milk. but honestly once you get the hang of things its really no different to having any other baby, just be prepared to stares and the odd comment but you will find your protective instincts will come out! I could keep rambling for ages but if you have any questions or want to see any before and after photos just let me know. |
Posted By: KateEmma
Date Posted: 03 February 2009 at 3:08pm
| Thanks so much for that, my2angels. I guess it seems a lot harder being at the start of this journey but as I get along and get more and more informed, it will be easier. Its so nice to know that there are others out there that are going through the same thing, its a really positive start. I have a few meetings booked in already so I'm excited to get as much info as possible particularly into feeding etc. Can I ask which bottles you used? I believe there are a couple out there, Chuchu and Rosti, and how you obtained them? Once again, thanks a lot. Look forward to hearing from you, Kind regards. |
Posted By: mum2paris
Date Posted: 03 February 2009 at 8:37pm
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From what i can tell there are a fair few bottles, including the haberman teat as well - in our unit the speech language therapist tends to organise them and once baby has been sorted to find out how they feed with them and which they feed best with they sort it out for you i think.... otherwise it could get pretty expensive buying them all to try out yourself... (if you want to have a look sometimes chemists do have the cros cut chuchu teats and habermans etc.) ------------- Janine and her 2 cool chicks, Paris & Ayja 
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Posted By: my2angels
Date Posted: 04 February 2009 at 9:50pm
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yeah i wouldnt go buying bottles yet cos chances are you will get them from the hospital or at least tell you the best place to get them. I know my friend just used a basic bottle though and was given a special thing to put in the teat to control the flow....will find out more abou that for you though.
Yeah the shock is the hardest. Just dont go googling pictures because they are not your baby and you are always going to be upset seeing other peoples kids but when its your own you feel completely different. and remember it comes down to a cosmetic thing, but at least one that can be fixed and once you are in the system its great for the kids. Kobe has had speech therapy, grommets and dental care all very normal things that lots of kids go through but because we are in the cleft clinic we get it all really quickly because you get referrals from the plastic surgeons etc... we go yearly and the orthodontist, plastic surgeon, speech therapist plus some others all see you at the same time and discuss how things are going and any concerns you have etc... and monitor how they are going. Kobe for example has a tooth that is crooked (he had knots in his gums) so the orthodontists looks at that even though they wont do anything till his adult teeth come through and if he needs braces they are all paid for and if he wants a nose job later he can get that for free too (his nose is actually fine but his nostrils are uneven which you cant tell unless you look up his nose and well its not like people look up his nose often!). So the point of my rambling is that they are taken care of and once you get the repairs done you wont even remember after a while. I was really sad after we had it done cos i felt like he wasnt my wee kobe anymore (but glad we got it done of course, it was just odd) |
Posted By: fire_engine
Date Posted: 04 February 2009 at 10:00pm
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I've bumped the other thread. I also suggest the Cleft Lip and Palate Support Group - www.cleft.org.nz - website - they are a fabulous source of information and support. You'll be under Middlemore and you're in fantastic hands there - they have great surgeons and speechies, and offer really good support and follow up for babies and their families. ------------- Mum to two wee boys |