My Baby Has A Cleft Lip & Palate (How We Found Out + What It's Like)
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- čas přidán 17. 02. 2018
- In this video I share my personal story of having a baby with a cleft lip and palate. This is a live replay and I do get a little emotional!
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Jessica Pumple is a registered dietitian, certified pre & postnatal fitness instructor, and pregnancy & postpartum core exercise specialist. She helps pregnant women stay fit, have healthy babies, and easier labors. She helps new moms with postpartum recovery, to heal and strengthen their core and find more energy!
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#cleftlipandpalate #cleftstrong #cleftproud
I completely love your videos!!!
You are so lovely and real.
Thank you for all the precious information you've been sharing with us!
God bless you and your family.
Thank you so much for telling your story courageously ! I really appreciate it
Simply beautiful as always!
I adore you! My first pregnancy was extremely difficult and hearing another moms journey through the fear and unknown helped me process that more than I imagined. Your videos have been part of my daily routine during this pregnancy (second!) and watching this has just solidified how grateful I am for you & your channel! Love all of the positivity and how you create such a lovely community for moms! Keep it up!
Hi Rachel! Thank you so much! That truly means the world to me. 💞
Dear Jessica, I have been following your pregnancy yoga videos (which I LOVE!), when I came across this video. I am not sure if you still read comments on old videos like this one. But this one hit me hard! Let me tell you how much I appreciate how open you are about this super sensitive topic. When I was pregnant with my first, we learned she had a big defect on her intestines at 24 weeks, the defect is also strongly associated with Downs syndrome. So I can totally relate to how you felt and how extremly hard the rest of the pregnancy felt. Thank you for opening up about this, it helps a lot!
What a beautiful story, and what an amazing momma you are!
Thank you so much. I was the most nervous for this video, but wanted to share about my beautiful Greyson :) He's 8 now!
“We like what we’re familiar with” is psychologically true. Very smart familiarizing yourself with wide smile babies!
Beautiful retelling of your experience. The emotional roller coaster of awaiting the diagnosis, the hard work of bottle feeding breastmilk, and helping your sweet boy live his best life!
Just found this video & it is so encouraging to me! We just found out our son will possibly be born with cleft palate & we are also planning to name him Grayson ❤️ thank you for sharing your story, it’s still encouraging even years later!!
Thank you so much for sharing your story! I found out 4 weeks after my anatomy scan that my baby body has a partially obstructed bowel and bowel dilation. I had a very hard time finding resources for natural birth during a high risk pregnancy. Your story and your channel are a beacon of hope for me. I very much relate to all of the emotions you experienced and then some. ****I agree, looking at pictures of babies with the same condition as yours is surprisingly helpful. I was very worried my baby is going to need a colostomy bag and it was just very intimidating until I watched a mom change a diaper and empty one. Baby was chill and happy the whole time and it seemed a lot less scary after watching that.
Thanks Paula! This was a super scary video to do. I was shaking so much because it was so personal ;) The whole process was a little therapeutic though 👍 Are you going to include some of your story on your channel too?
God bless you !
This is so interesting! I assumed it was always genetic. Nice video Jessica! It's great that you're sharing your personal story!
Omg…. I follow your prenatal exercise, never knew you had the same experience as me! I’m expecting a clefty in March 2022. How is your son’s speech? And was he more prone to ear infection?
Thank you for this video!! We just found out 2 weeks ago that our first baby will have a cleft lip and possibly palate also. That was a bit of a shock, because the pregnancy has been so smooth, you just feel like you would know if something is wrong. I went back this past week to the specialist for further testing and the baby has an EIF (calcium deposit on the heart), short femur length (I’m 4’11), and there is slightly (1cm) of excess amniotic fluid (polyhydramnios) around the baby. All of these individually are not concerning but we were told that together could increase our risk for this being caused by a chromosomal disorder. I wasn’t worried at the doctor (at that point had just about gotten comfortable with the diagnosis of cleft), but left the office and turned to Google and also found Trisomy 13 and 18 in the results. My past 48 hours have just been miserable. We still do not know the results of the genetic testing so I am still an emotional wreck, but just wanted to reach out and thank you for sharing your story! We don’t know how ours will end yet, but I don’t feel so alone.
oh Stephanie. I'm so sorry you are going through this. This 48 hours after I googled Trisomy 18 was the most difficult of my life. All the testing is good, but also can be scary because I feel like they pick up on every little thing now and then they have to warn you of the risks. I hope that is just the case for you and you will have your healthy, happy beautiful baby with just a cleft lip/palate. I will be thinking about you and sending you prayers and positive vibes. Feel free to dm me on Instagram if you have any questions.
I was wondering why you looked so familiar to me while watching this video.. I am already subscribed and have loved your stretching videos !! Very helpful. I am also expecting a baby with a cleft lip and Palate, my first. Its very scary to me and i feel as though the Genetic counsellor I spoke to was pushing me to get a amnio procedure. She said they see no other concerns with the ultrasound so I am hopeful that the cleft lip and palate are the only problems.. Thank you for sharing your story. The more I learn the more excepting and relief I have of the diagnosis and management of it post partum.
How's ur Baby now? I also deliver a Baby with cleft lip and palate doc recommend surgery in 3 month and 9 I'm so worried
All babies are beautiful 😍
Thank you xo Yes, they are!
I am having exactly this at week 23. Amniocentesis test results awaited and my baby has cleft lip + palate + club foot all on right side. I am so praying that the trisomy results are great so doctors allow us to continue with our pregnancy. I am heart broken to know we might not have a chance to see him 😭 .. also having a baby boy ❤️❤️ you are an awesome and strong mamma and your boy is blessed to have you. God bless him ❤️❤️
I'm so sorry you are going through all this. I remember how stressful if was. Sending prayers he will be safe and you will get to meet your sweet baby boy. Greyson is now 8 and we are coming up to his big surgery this month.
I adore you same situation facing me😢
Sending you love ❤️ You have a beautiful and perfect baby on the way then!
When did cleft baby's weaning should be started...is there any difficulties during weaning process?
All babies are beautiful my grandson will be born in the next week our beautiful boy reasearch has help me 💕
How exciting! Sending so much love! 💗 We continue to have such a positive experience...he started middle school today😍
❤
At my anatomy scan they found out my daughter had a form of skeletal dysplasia and after weeks of ultrasounds they told us she wouldn’t be able to breathe on her own and would only live for maybe a few hours after birth. When she was born she was 6.5 lbs (we thought she’d be 4 lbs) and was screaming and crying. That night in the NICU we found out she had a cleft palate. 2 months in the NICU we couldn’t get her to bottle feed so she had a gtube put in until her palate surgery. She has a rare genetic condition called COL2A1. Anyway, she’s thriving and is the happiest baby around❤️
Thank god she is ok! Best of luck ❤
I was born iwth a clef lip + pallate and i had a surgery when i was a few months old and now my lip looks almost normal
You are so amazing. How is he now ?
Hi Michelle! He is wonderful now! Turning 9 in a week. We have his next big surgery (last sugary was 12 months old) coming up in a few months. He’s a regular kid...He is brave, handsome and my favorite buddy ever! 💞
I would like to express my gratitude for this video. Thank you so much for sharing your story.
Two year ago, I was pregnant and on my 18th week US, my doctor said my baby girl was going to be born with a cleft lip and a congenital heart disease. We went through difficult weeks waiting for the genetics results and trying to understand what it all meant.
I found your video back then, and it was the most comforting thing I ever heard. I thank you so much for that. I did not know anyone who went trough similar history, so you were my best resource.
She is great and healthy, with the lip and heart repaired. And yes, I do miss her wide smile 😊. I try to share my story following your example, as we never know who is listening, they might really need it.
It is a bit old, but here is our story if you would like to watch.
Thank you again!
czcams.com/video/9SmirJh2aPw/video.html
How old does the baby have to be to get the palette repaired?
Lip is repaired at 3 months and palate at 12 months 💞
Joaquin Phoenix didn't actually have a lcleft lip, he was born with the line, but didn't require any surgery as it wasn't open. I wasn't aware that was a thing until I watched an interview with him about it.
Oh so interesting!!! Thanks for sharing!
😘😘😘😘💪💪💪💪💪😘♥️
Mam my daugter also born witg cleft lip
We are planning for second baby but scraed with if same situation happen again can you plz tell me isbit possible that is there any chance that second one also suffer with this
Yes they can - you should avoid synthetic vitamins like folic acid, and instead take methylfolate, for B12 take methylcobalamin, not cyanocobalamin.
You should get tested for MTHFR gene mutations.
I know you posted 10 months ago, sorry for the late reply, I have 4 children, my 3rd baby was born with a cleft lip and palate, she's 5 now and doing great, you can barely tell she even had a cleft once, I had a baby after her and he did not have a cleft lip or palate. They say the chances are higher after having one cleft baby but it doesn't mean that will be the case. don't worry and stay blessed x
Thank you so much foe reply
@@shh__b
@shh__b did you have extra precautions? What did you take in your pregnancy, can you please share
rasaljurybia
It's important to promote *methylfolate* - not folic acid which is the synthetic version of folate.
Many "midline defects" (face, brain, spine, heart, digestive system) are caused by MTHFR and other methylation gene defects in the parents. For these people taking synthetic folic acid can actually cause these "midline defects", and other serious health issues. This is also associated with downs syndrome, miscarriages, autism, cancer etc
"enriched" foods, and vitamins should be avoided at all costs - when taking vitamins they should always be the natural versions = methylfolate instead of folic acid, methylcobalamin (B12) instead of cyanocobalamin etc otherwise these chemicals will build up in the body and cause problems.
Yes, this is an older video and I was actually really devastated to see the link with autism to folic acid in the research since I made this video. Thanks so much for your comment.. I thought about it, but I think it’s time to take this video down and redo it with the correct/updated info 💞
I know nothing about making CZcams videos or editing - but if you don't want to have to talk about all that you could put an insert at the front of this one correcting that part and saying every time you say folic acid you mean methylfolate and why.
Many dr's don't even seem to understand the difference - Dr Ben Lynch has a CZcams, and Facebook channel and is very approachable, and willing to share research.
When it's due to a methylation mutation like MTHFR there are also issues with anesthesia we have trouble at the dentists because locals wear off too quick, and major issues with recovery from general anesthesia, we are much more likely to be the people who die from anesthesia - most dr's, and even anesthetists don't tell us that we need to dose up before and after any anesthesia with high doses of B12 methylcobalamin to help prevent neurological damage - I'm always learning, I only recently learned about this one.
The other controversial issue is the vaccine autism link for people with methylation mutations - this is where it's important to understand how epigenetics come in to play - just because we are born with a gene mutation does not always mean that we are doomed to its fate = not unless it gets "triggered".
And we are ALL born with gene mutations, it's only an issue depending on where the mutation is, and whether or not it's been triggered.
In the case of congenital heart, brain, spinal, cleft etc issues that ship has sailed, we can't undo that other than with surgery. But for issues like autism, dyspraxia, SPD etc these can be triggered yes by folic acid consumption by mothers prior to birth - but more often by childhood vaccinations, because our bodies can't methylate the adjuvants, and this triggers neurological damage... And sometimes death/SIDS/VIDS.
We have found life altering healing by implementing the first phase of the GAPS protocol /diet followed by a paleo, keto, meat based diet.
Good points.
Petroleum gas also causes this birth defect
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