Hello

Jenn - posted on 01/19/2009 ( 24 moms have responded )

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Hi there I am Jenn and the mom of 3 beautiful little girls....Kaelan Feb 01 Nadia Jan 07 and Erykah July 08.
My last bundle was born with a partial cleft (well that is what I was told it was). You guys are so lucky to have such wonderful doctors by the sound of it. I feel that I have been pushed on the back burner and they will fix the "problem" sometime in the spring.
Can I ask you guys what if any problems you are facing with your child's teeth?

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Vida - posted on 01/23/2009

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It upsets me so much that the guy didn't even offer guidance regarding the feeding, that all he did was say not to choke the little one! 
My daughter was born with a very wide cleft lip/palate, as I mentioned.  I used the Mead Johnson bottle on her without any trouble, she never choked.  There is a method to the feeding, of course, but, really, once you get in sync with the child, you can't go wrong.  I'm so angry with your doctor, I really am.  :(  I am appalled with the lack of compassion that is going on.  The relationship between the surgeon and the child's whole family is so very important.  He/she not only treats the child, but essentially the family -- on an emotional level.  My daughter's surgeon was aware of the fact that I suffered a very severe case of postpartum depression.  During our appts with the cleft team, he not only made sure that Vilija was thriving but also made sure to always ask ME how I was doing, if I was coping well, taking my meds, and going to my therapy appts.  Even to this day he asks about the family, how things are going.
I'm so soooo sorry.  I know I'm rambling now, but I am just aching for you.  I'm so wishing you and your daughter all the best.  Keep in touch.

Jenn - posted on 01/23/2009

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Thanks Vida I am going to call the children's hospital on Monday and see if there is anyway I can see someone with out seeing my family physician..
I also mentioned to him that she is gagging and don't have a good latch when she is eating and asked if he had heard about the squeezable bottles you were talking about and all he said was I would have to be careful and not choke her. I went to local stores to see if I could purchase them but nothing so I guess I am going to have to find them on line and no doubt by them from the states.

Vida - posted on 01/23/2009

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Jenn, I'm really sorry that you're being given the run-around.  I wish I could have you come see my daughter's surgeon!  It's so not right, the way you're being brushed off in this manner.



Please keep us updated.

Vida - posted on 01/23/2009

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Jenn, I'm really sorry that you're being given the run-around.  I wish I could have you come see my daughter's surgeon!  It's so not right, the way you're being brushed off in this manner.



Please keep us updated.

Jenn - posted on 01/23/2009

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Well I went to the doctors today and am back at square one feeling again that I am on the back burner. When I asked the family doctor if he could send me back to the surgeon to find out when I may have the surgery done and that I had some more questions for him. He just said you will here from him soon and brushed me off. The problem with here is I don't think I can just call a pediatrician and see him/her. I think my family doctor would have to send a consult. So I guess I can try and patiently wait to see when I hear from the surgeon.

Cheryl - posted on 01/22/2009

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Vida, yes we did use the squeezable bottles. That is what the hospital gave us to use and take home. They worked really well but Christian could not suck so that is why we made the hole in the nipple bigger. He had a unilateral cleft lip and palate also.



Jenn, please keep me updated on what you hear from the doctor on Friday. Hopefully he will refer you back to the surgeon or the team so you can get some better answers. I know that it can be very trying but everything always manages to work out. Best of luck tomorrow.

Marie - posted on 01/22/2009

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I feel so behind!  It sounds like Vida answered a lot of your questions,  BUt I wanted to say a couple things.  First, clefts are hard because they vary so much from person to person.  We even got to talk to a surgeon before Drew was born and he gave us the whole low down.  Funny, only like 2 or 3 things happened when he said they would.  Drew's cleft was so severe that we had to wait for him to grow before things could be fixed.  There are SOOOOO many variables!  As for the ultrasound, it is not a science.  Drew's cleft was SEVERE and they couldn't be sure his palate was cleft.  Tissue is white.  No tissue is gray.  If the cleft is small or, in the case of your child's palate, there is some closure, therefore some tissue, they wouldn't have seen it on ultrasound!  So, while a lot of us find out at ultrasound, there is a group of parents who don't know until birth.



Now, as for feeling like you are on the back-burner, I think we all have been there.  To the doctors, this is everyday.  And, they know what is going to happen and sometimes forget that we don't!  I have found it sad but true that I have to advocate for my kids and myself.  We recently found out that our baby (not cleft affected) aspirates when he eats.  We, as you were just sent home with a "good luck" for the most part.  We have since been back and he was WORSE!  Still, no referrals, recommendations or answers.  So, I found and talked to a speech therapist and called my ped for a referral!  I have it easier in some ways- I am an RN and I am not afraid to call a doctor and tell them what I want.  I have also been raising special needs kids for almost 8 years now and I know how to negotiate the system.  I am proud of you for taking action.  DO tell your ped you want to see the surgeon again.  Ask questions,  Tell the surgeon you want to know what his tentative (remember, it can always change) plans are.  It is sad that we have to be the ones, but as moms, we have to just get in there and make it work our way!  (Yeah, I am pretty sure all my kids' doctors hate me.)



I am sorry that you haven't had the best experience!  I wish every doctor and nurse was kind and supportive and informative.  If you have specific questions or need to vent, please post here!  Vida and I try to check frequently and answer questions and the moms on here are so awesome!  We really do have to support each other because so few people really understand what it is like!  HAng in there!

Vida - posted on 01/21/2009

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Jenn, I'm in Pennsylvania, in the Pittsburgh area.
I don't mind sharing pics of my daughter, ever.  :)  No worries, I totally understand.  Not knowing what to expect is part of the experience, I have been there myself.  Once you start "getting into things", you'll become so very seasoned in the world of clefts!  LOL.  ;)
The Mead Johnson bottles were available to us from our cleft/craniofacial center, plus, I believe hospital in which I delivered had some on hand as well, I don't remember now.  Obviously not all hospitals will carry them... but personally, they really should!



I'll post the photo of my sweetness's mouth. 

Jenn - posted on 01/21/2009

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Cheryl no one has told us that ..but maybe I will ask the family doctor when I see him on Friday.
As for the cleft lip/palate team there is one that i did see but nothing was mentioned to me about seeing them again so I am not sure if I will or not.
I will also maybe mention to them that maybe the palate is not formed properly or like you said thick enough and maybe that is why she is having troubles. Maybe if I go with all these concerns to the family doctor he will send me again to the team and I will hopefully get some answers.

Vida, I would love to see a picture of your daughters teeth if you do'nt mind. I am not trying to sound like I am upset if my daughters teeth are not perfect I just really don't know what to expect.

THanks a million for listening and helping me with some really good suggestions. I will have to see if I can get some of the Mead squeezable bottles.
Vida can I ask where you are from?
No doubt I probably can not get them in Canada, I find most things that people find useful are only available in the US

Vida - posted on 01/21/2009

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"Did anybody tell you to make the hole in the nipple of the bottle a little bigger? We had to do that because Christian had such a hard time sucking on it."




Cheryl, I was wondering something... what type of bottle did you use?  Was this before Christian's lip and palate repair or after?  Were you ever offered the Mead Johnson squeezable bottles?  That's what we had for Vilija, she was born with a very wide unilateral cleft lip/palate, and had absolutely no suction whatsoever. 
I actually still have one as a memento, LOL.



Vida - posted on 01/21/2009

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Hi there, I'm finally getting a chance to read more and respond more...
Sorry that you feel as if though your child was put on the "back burner", so to speak.  I was first going to say that, if surgery would need to be done, it wouldn't be done just yet -- palate surgery is normally done between the ages of 12-18 months, so, technically, fixing whatever is going on sometime in the spring would be the correct way to go about it.
That being said, however, it sounds like you're not getting the answers you really want from the doctors, and I'm so very sorry about that.  I'm also sorry about the high-risk pgcy... I can so very relate to that, as my pgcies were highly complicated and high-risk as well. 



We found out via ultrasound that our daughter has a cleft lip/palate.  I did have many ultrasounds as well, with both children.  I could probably make up an album of u/s photos, LOL!  ;)



Not everyone finds out about a baby's cleft via ultrasound, it all depends on the positioning of the baby and such.  I have met/chatted with moms who had quite a few ultrasounds during their pregnancy and then find out after delivering that their baby has a very obvious cleft.  In your case, since your daughter's isn't severe, it's no wonder it wasn't picked up on any ultrasounds.



As far as teeth are concerned, my daughter, born with a very wide unilateral cleft lip/palate, is now 6 1/2 years old, and some of her upper teeth are definitely affected, though it really doesn't look severe.  The gumline is also clefted, of course, and, as Cheryl mentioned, a bone graft will be done at around age 8. 



I very much remember the difficulties in feeding Vilija before her lip and palate were repaired.  (lip and nose were done at 3 months of age, palate at 13 months)  Yes, quite a bit of food/liquid came out of the nose, that was a given.  She wasn't able to take a bottle while laying down, I had to hold her up so that she wouldn't choke.  We used Mead Johnson squeezable bottles since she didn't have any suction. 



I wish you all the best, please know that you will find some wonderful people around here and loads of support.  :)



Oh... I can post a photo of my daughter's upper teeth if you'd like, LOL.  I just took one on my cellphone... let me know if you'd like to see it.



 

Vida - posted on 01/21/2009

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Hi there, I'm finally getting a chance to read more and respond more...
Sorry that you feel as if though your child was put on the "back burner", so to speak.  I was first going to say that, if surgery would need to be done, it wouldn't be done just yet -- palate surgery is normally done between the ages of 12-18 months, so, technically, fixing whatever is going on sometime in the spring would be the correct way to go about it.
That being said, however, it sounds like you're not getting the answers you really want from the doctors, and I'm so very sorry about that.  I'm also sorry about the high-risk pgcy... I can so very relate to that, as my pgcies were highly complicated and high-risk as well. 



We found out via ultrasound that our daughter has a cleft lip/palate.  I did have many ultrasounds as well, with both children.  I could probably make up an album of u/s photos, LOL!  ;)



Not everyone finds out about a baby's cleft via ultrasound, it all depends on the positioning of the baby and such.  I have met/chatted with moms who had quite a few ultrasounds during their pregnancy and then find out after delivering that their baby has a very obvious cleft.  In your case, since your daughter's isn't severe, it's no wonder it wasn't picked up on any ultrasounds.



As far as teeth are concerned, my daughter, born with a very wide unilateral cleft lip/palate, is now 6 1/2 years old, and some of her upper teeth are definitely affected, though it really doesn't look severe.  The gumline is also clefted, of course, and, as Cheryl mentioned, a bone graft will be done at around age 8. 



I very much remember the difficulties in feeding Vilija before her lip and palate were repaired.  (lip and nose were done at 3 months of age, palate at 13 months)  Yes, quite a bit of food/liquid came out of the nose, that was a given.  She wasn't able to take a bottle while laying down, I had to hold her up so that she wouldn't choke.  We used Mead Johnson squeezable bottles since she didn't have any suction. 



I wish you all the best, please know that you will find some wonderful people around here and loads of support.  :)



Oh... I can post a photo of my daughter's upper teeth if you'd like, LOL.  I just took one on my cellphone... let me know if you'd like to see it.



 

Cheryl - posted on 01/21/2009

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Well if it did close late in the womb then maybe there is a chance that it is not thick enough. I don't know if that is a possibility or not.



So how often can you see the cleft lip/palate team? We meet with ours once a year but we still have to make appointments with the doctors to actually schedule procedures. Did anybody tell you to make the hole in the nipple of the bottle a little bigger? We had to do that because Christian had such a hard time sucking on it.

Jenn - posted on 01/21/2009

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I know that they can tell by looking and feeling but the thing that bothered me the most about what he said was he thinks that it closed late in the womb and will watch it.

I wish I could go down to the States to have someone else look at her. or even in another province but not sure if it would be covered by our medical.
We do have a cleft lip/palate team that we did see (surgeon, pediatrician, orthodontist) we were supposed to see an ENT as well but he was not there that day.
The only problem she has I see so far with eating is that she can not latch properly and when she spits up it does come out of her nose. and she is a super messy eater, but that could just be her...she does gag alot while she is eating if she is not sitting up..I now have her on a bottle and she seems to do a little better since I can prop her up more then when she was breast feeding.

Cheryl - posted on 01/20/2009

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The doctor should be able to tell by looking at the palate whether it is closed or open. I don't know that an x-ray would show this type of thing.



I am currently living in Florida, US. I definitely understand wanting to fix the things while they are young. It was tough with Christian's lip and palate surgeries because he was so young. He could not tell us if he was in pain but at least we don't have to worry about him remembering what he went through.



The doctors should definitely be trying to fix things while they are young. I think that makes the whole thing less traumatic for them. Even though it is still hard as parents to see your child go through it all.



I understand that this is definitely not the easiest thing in the world to deal with but you will make it through. You should be able to rely on the doctors to give you honest information. I mean how else do you know what to do. I would recommend coming to the US to get the surgeries done but I know that is a difficult option. Do you have cleft palate clinics there? When you go to the clinics you are able to meet with all kinds of doctors (plastic surgeon, speech therapist, dentist, social workers, etc.) all at the same time. Then the whole team looks at each case and decides on a strategy.



You should be able to open the mouth and look to see if the palate is intact. It could be partially open, fully open or completely closed. It just depends on the case. Christian's palate was one of the worst ones that our plastic surgeon had seen but they managed to fix it in one surgery.



Has your daughter had any problems with feeding? Before they fixed Christian's palate we had problems with formula coming out his nose since the palate was completely open. We had to be careful and hold his head up higher so that it would not run into his nose.

Jenn - posted on 01/20/2009

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That is where I am having some troubles trusting the doctors since this was a high risk pregnancy right from the start and I can't even count how many times I went in for an ultrasound. Lets just say the last month I was pregnant I think I had 5.

My hubby and I were talking and I have an appointment this Friday with the family doctor and I am just going to tell him that I want to go back to the surgeon about this and get some answers.
I mean when I seen him and he thinks the palate is closed? just by looking at it. come on there must be a test or something like an xray even if it is just to keep me happy.

Can I ask where you are from?
When I was asking about the teeth it is not that I am superficial but I mean wouldn't you want to correct the gap now that she is young?
It is good that you have a good support system. Don't get me wrong Jason is amazing and he thinks the same just I am the more outspoken one. I think he just puts the trust in the doctors. And I am from a very small town where there is not too many people if any that are dealing with this. Well I don't know anyone that is anyway.

Is there signs that maybe I should look for to maybe show me if they palate is not fully intact? thanks for listening it does help me out alot!

Cheryl - posted on 01/20/2009

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Wow! I can't believe the doctors. My doctors told me before Christian was even born that he would have a cleft lip and possibly palate. I am so sorry for the things that you have been through. It is hard enough with doctors that care, I can not imagine your situation.



I guess that I have been lucky since my sister-in-law was also a cleft lip and palate. So my inlaws have been of great support and answers. We definitely want the best for our children and we should receive nothing less than that. They are the most precious gift that we could ever receive.



All that I can say is that I would definitely like to help you in any way that I can. If you have any questions please let me know and I will do my best to help you. I know that sometimes it has been helpful for me to just have someone to talk to and it is the least that I can do. I hope that things get better and I will definitely be praying for your situation.

Jenn - posted on 01/20/2009

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well I just feel they dont think that it is important to have her fixed as much as I do. I will explain what I mean from the beginning,

The day Erykah was born after I got into the recovery room my hubby took her in to see me, that is when I noticed a gap in the front of her gum(upper)and she had a fine line going from her top lip up to her nose. When I got back to my room from the recovery room and was able to look at her a bit more closely I noticed on the roof of her mouth a line {that almost reminded me of fat(completely white)} going from the gap in her gum to the back of her throat. when I asked hubby if anyone had mentioned anything about it, he said no. When the nurse came in I voiced my concern to her but she told me just to ask my family doctor when he was in to see me the next morning.(he was in the delivery room with me) So when he came in I asked him about it, he said nothing was mentioned to him about it but he would look into it. Well i took her home thinking it was nothing and was a bit concerned but something would be done if need be. I was EBF and by the time she was about 6 weeks I would cry everytime I was feeding her b/c it felt like her little gum was as sharp as a knife. Well finally they sent me to the children's hospital in my area and seen a surgeon, Sept 2008, he said that there will have to be surgery b/c of the cleft but it won't have to be done until sometime in the Spring of 2009, he said that her lip and palate closed late and he is hoping that the palate will be fine but didn't say to me I will check her in a couple months just let me go and said that he would be in contact with me when he was going to do the surgery.
After that appointment I seen a pediatrician and a orthodontist in the childrens hospital and the dentist said that there are possibilites of abnormal teeth but that was it..wouldn't tell me what I could of should expect.

Maybe I am just being a bit paranoid with her but you always want what is best for your child right?

Cheryl - posted on 01/20/2009

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Hello! My name is Cheryl and I have a 3 yr old that was born with cleft lip and palate. His front teeth are all jumbled together and there is one that will never come in. He is going to have a bone graph and a fake tooth put in around 8 yrs. old. Luckily the dentist that we have is familiar with cleft problems so that has helped some. So what kinds of problems are you having with the doctors?

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