Harper's Success Story - Treatment of Beckwith-Wiedemann Syndrome
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- Опубликовано: 28 сен 2024
- When Harper was diagnosed with Beckwith Wiedemann Syndrome shortly after birth, her family knew they wanted the best team possible for her tongue reduction surgery.
Harper now leads a limitless life thanks to Dr. Chad Perlyn, an expert in treating macroglossia, and the pediatric plastic surgery program at Nicklaus Children’s Hospital.
Learn more about the Nicklaus Children's Hospital Center for Beckwith-Wiedemann Syndrome: www.nicklausch...
I was diagnosed with BWS at birth, I’ve had almost 30 procedures since then. I am now 15 going strong ☺️
I did have that exact situation of being born in a local hospital that had no idea about my condition, so I had to be Transferred to GOSH to have my procedures 👍
ابني لديه خصائص متلازمه بيكويث ولد منذ شهر ايه الإجراءات اللي ممكن اعملها وايه المصاعب الصحيه اللي ممكن تواجهه ارجو التواصل والرد
@@صفاءابوالخير-ش5جابني عمره 3اشهر
و انا من الجزائر اذا ممكن نتواصل
رجاءاً الترجمة
My daughter is olnly 1.5 month she have a macroglossia there tongue is slowly growing up.
Hi
Are you from India?
If yes...could u please share your contact number. I need to talk to you. My daughter is also suffering from macroglossia. Please 🙏 it will be a great help for me
@@letslearntoshine2112 please let me know if we can connect over call, i too have a son with the same issue who is one month old and I am very worried about him
how is your daughter doing now?
@@hijab473 share ur contact details
@@hijab473yas same issue my son he is born 17January 2024 tongue is slowly growing up we are worried if you have any idea about treatment plz share me'
:(
Good day sir..im from Philippines, my pregnant wife was pregnant she done of ultrasoun and then we found out that our baby is suffering a macroglossia,frog eyes and omphalocoele inside her womb..can you please help us?thank you and GOD BLESS
I don't know if you still need a message but I'm seventeen and was born with the syndrome. I had macroglossia and omphalocele too but grew up not knowing about it because my parents never told me. Anyway, I dont know if this will help you but I'm completely fine now with no indication that I ever had the syndrome apart from the scar from the operation on my stomach. I hope your baby is okay and please have hope that they will get better.
Hello can I talk to you ? My baby has this rare syndrome how is your life now is going did you had any problems growing up
@@عبداللهالصفار-ظ9ص hi, yes of course! I had to get scans of my stomach until I was age 9, every 3 months and then every 6 months as well as body measurements to check for cancer, thankfully they all came back clear. The enlarged tongue bothered me a bit, I was offered surgery for it but my parents didn't take it. my tongue is still larger than average and it affects my speech slightly but not really noticeably. I was also always one of the taller children in my year at school, which was pointed out a lot, but I've since grown to a regular 5'7". Finally, I was teased in school for my scars on my belly button from the omphalecele surgery. Apart from that, I was pretty much fine growing up. When I was born, the doctors told my parents that if you're going to be born with a syndrome, this is the better one to have, because in most cases effects are limited and wear off by adulthood. Good luck!
Thank you so much i hope you have a happy life ❤️❤️
@@عبداللهالصفار-ظ9ص aw thank you, and you :)
Nice!
Sir
I am from India.
My daughter is born with macroglossia. She is one month old. Doctor said that she will take one year time and her tongue will automatically adjust. Please help me whether should I believe the doctor saying or should I consult other doctors. Please reply if anyone's baby faced the same problem.
my brother has macroglossia and as he has grown (he’s 3 ) the size has grown with him he has adapted to his enlarge tongue he’s able to say a couple words and tucks his tongue in his mouth but it does still cause problems like sleep apnea and difficulty eating. The doctor had suggested a tongue reduction for my brother but he can’t get the procedure done till he’s 4.
hi, I have the same issue and I am from India, will it be possible to connect over call
My son is born with macroglossia. He is 3month old..same problem I don't know what to do treatment if anyone knows this treatment plz tel me.
@@jabedali5048 u r from where?
@@tiffanydelacruz6687 does he has any other symptoms apart from enlarged tongue like red mark in the mid of forehead or difference insize of half part of body
I have Beckwith-wiedemann syndrome
I wanna talk to you if possible
possible
i have bws too (:
Hola te ópera dime cómo te fue mi hija los tiene