Be comfortable in your skin – this is a judgement free zone. Find out more!

Huggies Forum

All mummies and daddies with beautiful cleft palate babies - c'mon in! Rss


Victoria.
Good morning, well I hope its a bit better for you this morning. I read your post and it sounds like your running around in circles, and I'm sorry that you are going through so much at the moment. I thought you might not mind my input, not sure if its any help though.
Before you read I know that your DS is a bit more severe than my DD, and what your going through weighs more than what mine did. Below are just my opinions only on what I went through.
In regards to behaviour, sometimes we need to take a step back and not think that everything they do or dont do is related to thier condition.
Some kids like their own company, they may just want to do thier own thing and be independant. My brother used to take himself off to the movies if no-one wanted to go with him. I thought it strange but he's very independant.
Also kids develope thier speech at different times and yes our cleft kids will develope a little bit later than whats considered normal. I remember my DD never spoke a word until she was about 11 months old, she would point to what she wanted and I would try and get her to say the word, but she was stubborn and would just crawl away, but I never made a fuss about it, but I was very very worried. Now she doesnt shut up. lol
I'm sorry but I am also critical of pieces of paper that say kids should be doing this and this at such an age. If the child is progessing normally in other things then I think their fine.
Does your DS want to join the other activies you mentioned, he sounds very clever and happy while at home, do you discuss things with his teacher in front of him or other kids. My daughter hated when I did that, she didnt want anyone to know and was able to mix better if they didnt know anything about her, she was a bit older of course.
I myself used to take one day at a time, and hoped the next day would bring us closer to a new development. After a big fuss around the age of eight, I had to pretend she had no problem, and speak nothing of it unless it was for some appointment. I think I made too much fuss and stress at the beggining, when all she wanted was to be left alone and progess and do things in her own time. Easier said then done. I know you are worried about his interaction with other kids and I was the same, only you know what your feeling and what the situation is. He is your son and you know whats best.

Your DS is a real credit to you and keep on doing what your doing things will get easier as time goes by. Take care all. Karen
[Edited on 14/04/2008]

Hi all,

Thought I might join you as it sounds like you all may be a fountain on experience which is what I'm looking for. I found out on Friday at my ultrasound that my little boy due in August has a severe cleft lip and prob palate as well. It was a bit of a shock at first but once I started researching, as I have to admit I didn't know a great deal, I feel a lot better. I go for another ultrasound in a month to take a better look so will know more then. I guess I just want to chat to other parents about the condition because I don't know anyone else that has gone through this.

My biggest fear is watching such a small bubba go through surgery and the pain after. I know it's better than if they were to have it once they remember it but it mustn't be easy. We had a lot of fertility probs and this pregnancy was from IVF. People who want to find a reason for this happening blame that but it may have happened anyway.

I am also worried about feeding. I breastfed my son until he was 13 months old with no probs except the occasional formula top up before my boobs could catch up with his growth spurt. Has anyone else had to also deal with a toddler and have the feeding of a cleft baby? I'm worried because of the extra attention the new baby will need my eldest will feel left out and that I just won't have enough energy to spend on him.

As you can tell, I have a few concerns but have to say I'm happy that at least it's not a life threatening condition, it's treatable. I look forward to chatting to you ladies as time goes on.

Hi TJK

I will answer you first then do another post for my stuff LOL!

Congratulations on your pregnancy, I imagine it took a fair bit of heartache going through IVF and you must have been thrilled to get pregnant.

For the people who 'blame' this or that for the cleft palate/lip of your unborn child, as far as I can work out, it is just 'one of those things' although I have researched PRS more than an isolated cleft. That aside The experiance of everyone I have met/spoken to is that you still fall head over heals in love with your baby, regardless of the cleft, and a lot of people love their child's gummy smile. The breast feeding association do have a booklet on feeding your cleft palate baby - some people can still breastfeed, but I found despite hogging the attention of every lactation consultant I could lay my hands on, that was something I could not achieve, but in the book it tells you ways that it can be acheived. You might be able to get an early cleft repair done, and then start breastfeeding afterwards - you would have to express till the palate is repaired for that to work. I express fed my DS for 9 months till my milk ran dry and then he had formula. On page one of this thread there is a link to the Haberman Feeder - a special bottle which allows you to squeeze the milk into their mouths. They are pricey but if it works, it is worth it!

With the surgery and the pain etc - I really wasn't looking forward to it either, and I can't lie to you and say it didn't hurt, but it was manageable with pain relief, and the surgeons were excellent - they let me accompany my boy into the room where they do the anaesthetic, and then come straight into recovery as soon as he was out. I was also allowed to sleep in the room with him the whole time he was in hospital. They had a pull out bed thing but he wanted me to hold him so they swapped the cot for a big bed and let me hold him all night which helped us both a lot!

It is amazing how well they look on the way out of surgery - I expected tonnes of blood and bruising , but it isn't that bad.

I know where you are coming from with the older one, your time and feeding & caring for the younger one, the issue of sharing time os a difficult one regardless, let alone with the extra time it takes to feed a clefty. I suggest reading to your eldest while you feed your youngest. Or finding some wonderful game that occupies your eldest happily while you feed - good luck with that! I think any preparation you can do in advance would be helpful, and suggest you visit your MCHN for ideas now, so you can start getting your child used to the routine, in part, early. I tried doing 'playing with dollies' to demonstrate the care involved in a new baby - DS decided to pull the dolly's legs off and see if he could make it fart on the whooppee cushion - best laid plans of mice and men LOL!

You might want to quiz the ABA as well - like I said they have that book - I might see if I still have it, if I do, and you want it, I will post it to you. They have advice on expressing long term, if that is what you decide to do.

Also seek out Cleftpals - they are a support organisation and were an excellent source of information for me. They might also have answers to some of your questions.

Good luck with everything, please come and chat here, and share any of your troubles or advice that you get!

Hope I have said at least one thing that is helpful in some small way.

Victoria xx
Hi Karen!

Thanks for reading my whinge! Sorry chick! You are such a great source of info, you pretty much said what my mum said to me today as well, I had wound myself up about DS's speech and group involvelemt, and I should be relaxing a bit more hey! Sorry - I had my head firmly up my own backside I think! That is why it is invaluable to have you, who is able to tell me this stuff because you have done it all before!
I try not to discuss DS's condition in front of his peers and I am stopping talking about it in front of him now too. It is a little tricky at kindy in that it is a bit of a scrum at picking up time so I had to hang around till everyone had gone before I could chat to the teacher.
I re-read what I had written this afternoon, and I sound like one of those uptight mothers who want their child to be the best at everything - really I am not like that! I was just frustrated because I worry that he will be left behind and will find that frustrating - it is silly but I feel responsible for his condition as it happened when I was growing him in my tummy! I have told so many people that it is 'just one of those things' but still I feel responsible!

My mum said his 'withdrawal' from the group could be as much about personality as frustration with his inability to communicate properly... she said my brother also did the same thing, and his 'kindy' (they didn't have kindy then but equivelent) teacher was very worried about it, but mum had had 2 kids before my brother and just let him be, and he grew up fine. I think she was trying to gently tell me to back off a bit and let him develop himself a bit. I think that might be good advice!

Thanks sooo much Karen - you are so wise!

Victoria xx




Nikki!

Thanks for dropping in. You are welcome to read and join in with stuff if you want. Thanks for your well wishes.

Victoria xx
Hi Victoria,

I had to laugh when I read my post also, I sound so "old school" its been a long time since I was in your shoes and I remember doing everything I was told to do in regards to DD's treatments. If they told me she had to turn three times and click her heels every day, I would of made her do it. lol
It really is a full time job looking out for them and with those pieces of paper with the milestones, I do use them as a guide only.

I dont think I ever felt guilty about what happened to her, I used to try and think back to what I was doing around weeks 7. I think thats the time in utero where the palate joins. It didnt matter how hard I thought I still didnt come up with anything I did wrong, its just one of those things that happen. Usually most of us dont even realise we are pregnant then.

C/Ps & PRS has to happen to some babies and mother nature picked you and other mummies to have these special kids, because she knew we could love, nuture and take care of their needs.

With your DS's withdrawel from groups, you may not find out until he is much older, as with my DD' I only found out recently she has a thing about eating in front of people. She's worried about dribbling and such, but I think its just a teenage thing. lol.
Anyway dont let your feelings of guilt get in way of the fantastic job you seem to be doing.
Take care Karen xo
[Edited on 15/04/2008]

Hi TJK

Welcome and congratulations on your pregnancy, I'm karen and an "older mum" I have two DD's 19 and 20 year olds and a 12 week old son. My 19 y/o has a c/p and prs.. Not sure if I can be of any help, but I think its great that you know about your baby and can do lots of research beforehand.

There is cleftpals that may be able to help you, they have volunteer mums who's kids have clefts, they can visit you at home and in the hospital.
You might be able to talk to the hospitals peadiatrician, which ever one you'll be under and also find out who your plastic surgeon is, you maybe able to talk to him about the operations.

The first twelve months is the hardest, and its going to be a full time job, expect (especially if bub's cleft is severe) ENT appointments, Pediatrician appointments, plastic surgeon appointments, speech therapy, possible x-rays to make sure baby's limbs are growing normal. (Cleft palates can be associated with other sydnromes or conditions) so you may need to also see a genetic specialist. I'm sure theres more.

It may sound all a bit much but take one day at a time, and with your son he will cope and adjust to your needs, it may be hard at first but you'll both go through it together. My older daughter is 18months older than the other and she coped fine. Just make sure you set some time alone together with him.
In regards to feeding somehow you will manage like the rest of us, and we will still be here to talk to if you feel the need to.
Do you have a husband or partner, that can help?

I have to go now but will pop back soon with anything else I can think of.
One more thing, baby wont remember anything, but after the ops for about 10 days they will be sore, but as long as mum and family are there with them they will be fine. Talk soon Karen

Thanks Karen,

It's wonderful that there are people out there like all of you to help others in the same situations. I feel lucky to live in an age where there is so much support out there that's so incredibly accessible.

I look forward to reading more as time goes on.

My obstetrician is going to give us some referrals to talk to paed and plastic surgeon next time I see him which will help. I'm glad that my elder son is at an age where he can go to preschool a few days a week, will make things easier that's for sure. Yes, I have a hubby who is very supportive. His work not so much. I hope he can get enough time off when the baby first comes home. Their theory is that if you can take two weeks off work, you're obviously not needed! The boss even had a problem with my hubby taking one day off to come to the hospital with me when I had my egg retrieval operation. He asked why he needed time off, it's not like he was having surgery! Makes me really cranky. Hopefully they'll be a little more understanding.
[Edited on 16/04/2008]

Hi everyone,

Just thought I would pop in to see how your all going.

Victoria. I noticed your name popping up here and there, good to see your back on track. How are you manageing things, and how is the family?

TJK How is your pregnancy progressing, good I hope, have you had any more scans, and how is your research and appointments going?

I have been well myself, we went to Canberra for a few days, and unfortunately my maternity leave payments end in a couple of months, so I am going to look for some night work.
Day care is too much, and we dont get hardly if any rebate cause of our earnings.
Though I still have 6 months unpaid leave to go, so if I dont find anything I will go back for a while.
Anyway take care, Karen

Hi Karen - how cute is your Luke ! Bless!

Yeah, I'm feeling a lot happier thank you! What a bum about your maternity payments ending - how do you feel you would cope, sleep wise with a night job? I have a Lark (early riser) and so our household is usually up and about by 6, so night work would be really difficult for me - specially as I like to have 8 hours (a long distant dream! LOL!)

TJK - I sent that stuff in the post, consider my A$$ Lame, for delaying for so long - sorry about that. You should have it all by now as I got one of those next day envelopes. Hope it has reached you.

We are dealing with the 5th ear infection in a row at the moment - I reckon the next ear drops I get I should just buy a litre LOL!

I am off for the night - I am reading tonight!

Victoria xx
Hello ladies,

Victoria, I would never consider you lame but I feel very grateful for anything.

Karen, pregnancy is progressing well thankyou, the weeks are flying by. Baby Lachlan (as he's come to be known by my son) has decided to try kick punch combinations so I get it from diagonal corners, especially when I'm trying to sleep! I have another scan on the 12th to get a better look at the cleft so should be interesting. From then we should have a better idea what we're looking at and we can go talk to the cleft clinic at the children's hospital, talk to the breastfeeding association about pumps, lactation nurse at the hospital to see what they're equipped with, yada yada yada. I'm trying not to do anything much until then.

I'm feeling rather blessed actually because I spoke to a lady during the week who wants to start at our playgroup. We were talking and it turns out her little girl also had a bilateral cleft lip and palate! We were both rather pleased to find out we were both in the same area, she sounded happy that she might be able to help me out. She went to the same hospital we want to so knows the place, surgeons etc. Should be very enlightening.

Well, have a lovely rest of your weekend.

Hey everyone!

This is a goodbye from me! I have really enjoyed talking with you guys, and appreciated all your tips and advice, but I have been spending way too long on the internet, we lose our connection soon anyway when the reno's start. I need to spend my time with my family, and doing real life things!

I wish everyone good luck, and happy parenting, its a long and bumpy road, but a bl00dy great one, and well worth the ride!

All my love

Victoria
PS it has been fun! xxx
Sign in to follow this topic