NEW MEMBER

Charmaine - posted on 02/15/2009

Hi Wendy

Myleigh was born the 29th of June and I was already aware of the cleft lip and palate at my 20 week scan(lip detected) and had an arranged 30 week 3D scan for the palate. In Australia cleft lip is the most common facial birth defect being 1 in 700. I was of course very shocked as i had 3 previous children with no defects. I cried while laying there on the bed as soon as the radiologist gave me the news. For the first week I cried every night. When Myleigh was finally born 11 days late weighing in at 11 pounds I was so relieved to finally see her face. I didnt cry surprisingly. I think I was just releived that I had finally met Myleigh. Myleigh then spent 11 days in the Special Care Nursery, where she was admitted purely for her feeding. That soon turned into a choking episode where she inhaled her reguritated milk. Myleigh was then put onto AR formula and was fed through a tube in her nose. When Myleigh finally came home I was so scared that it would happen again. Im so lucky though as at the hospital where my last 3 babies were born you get the option to have a Mother Carer who comes to your home for 1 week and helps with whatever you need. Myleigh hed 2 episodes in the next few days after having her home but luckily began to breathe again before the ambulance arrived. I tell you that was the scariest thing i have ever experienced in my life. Myleigh had her first surgery on the 29th of September at exactly 12 weeks of age. Myleigh had her lip repaired and grommets inserted into both ears as she had hearing loss due to the fluid build up caused by the cleft in her palate. Myleigh recovered really well and has full hearing now. Myleigh had her second surgery to repair the massive cleft in her palate on the 16th of December. Myleigh has recovered well after the surgery and is flying along. Myleigh still has a hole in her gum and also a gap there, but that will be repaired in future surgeries and extensive dental work. Myleigh has one tooth up in the cleft/gap of her gum that broke through at 10 weeks of age. Myleigh has been on solids since she was 3 months old with no problems at all. She does have her feed come out one nostril but it doesnt bother her one bit. Myleigh has 3 solid feeds a day and 4 milk feeds a day. Myleigh is now 10kg and doing so well for a reflux baby. Myeligh's next cranio facial appointment is on the 19th of March so I will know more after that.

Its nice to be able to share my story with mums and dads who are in the same boat as me and my family. I hope to chat real soon.

Love Charmaine

PS We are from Australia

xoxoxoxo

Wendy - posted on 02/14/2009

Hi Wendy,

My baby is 17 months old- like Ashley I didn't know about the cleft lip or palate until Lauren was born. I happy to say she is doing very well. We live in North Carolina.

My biggest concerns right now are speech and teeth- I am sure we will oral surgery in the future- but that will be a while.

Lauren is pretty chatty, but not much that is understandable yet- she does Mama and more recently Dad.

I am looking at your pic and Ashley's - my daughter has the dark eyes and hair as well.

They are all adorable.

Wendy - posted on 02/05/2009

Hi Charmaine, i was so excited when i found thsi site.  It's nice to talk to someone who understands what we are going through.  Your daughter is adorable.  I never thought that this could ever happen to me, my first born was perfect, and when i was pregnant the second time, it never even crossed my mind there could be a birth defect.  I think i was in shock for a few days and i just didn't want to believe it.  I cried for days and i kept telling myself that ultrasounds aren't always 100%.  Anyways, i did all the research on how i would feed her, issues, ect...and i was prepared, but nothing prepares you mentally until you take your first look at your new baby and see her that way.  I think i cried for hours.  But she was my baby girl and i fell in love with her. 

So she had her first surgery in Nov 08 for her lip repair, now we are waiting and getting her ready for a palate repair.  We have upcoming apts with dental, ENT, and audiology to see what our next next is, but she is doing quite well.  I am still waiting for her teeth to come in...What is she waiting for? :)

Where are you from?   Has your daughter had all her surgeries yet? Did you start her on solids yet?  Any teeth?  How are you doing with everything? I always have so many questions and it's nice to meet someone who understands.

Hppe to talk to you soon!

Wendy 

Charmaine - posted on 01/31/2009

Quoting Wendy:

NEW MEMBER

I have just joined this group. not sure how this all works. my daughter was born June 2008 and she a unilateral cleft lip and palate. I was so excited when i found this site because now i can discuss my concerns and issues with other parents that understand what i am going through.

Hi Wendy

I just joined the group too. My daughter was also born in June 2008 and also was born with a unilateral cleft lip and complete cleft palate. Its so nice to have groups like this where we can all make friends and chat.

Hope to hear from you soon

Charmaine

Carrie - posted on 01/29/2009

Hi Wendy.  My son was also born with a unilateral cleft lip and palate.   He is 3 now and doing great.   I wrote a blog for him that walks through his story if you want to check it out.   Feel free to email me with questions as well.

http://lukecleft.blogspot.com/

Wendy - posted on 01/26/2009

Hi Tamra,  how are you?  I guess you're an expert athis now.  I hope your boy is ok now after his surgery.  I always have questions and concerns ever since she was born.  I'm just taking this a day at a time.  We jsut did her lip repair about 2 months ago.  I'm from Canada, so our hospital is the Hospital for Sick Children here in Toronto, Canada and our doctor really did a fabulous job.  My next worry i guess is the surgery for her palate then with her speech.  She started saying "mama and mom" couple months ago, but that's not too hard to say...Plus her hearing may be affected as well.  Ii hope she'll be alright....

Keep in touch...

Wendy - posted on 01/26/2009

Hi Ashley, thanks for your reply.  Thank you, Your daughter is beautiful as well.  I'm surprised the doctor didn't see it before she was born?  I found out when they did my ultrasound at 18th week check up. They told me it was a cleft on the left side on her lip and possible palate, but she had a cleft on her palate as well.   So i was expecting it before i has her.  I have a little boy who is turning four soon and he was fine, so i was kind of shocked when they told me there was something wrong with my baby.  I didn't know i was going to have a girl at that time.  It is definitely a learning experience.  Have had her palate repaired yet ot is that surgery coming up?  How did you she do when she started solid food?  I can't my Maddy to drink her milk now she tried food.  Where are you from?  I'm from Canada.

Hoep all is well with you, hope to talk to soon.

Tamra - posted on 01/26/2009

Hi Wendy! My name is Tammi, and I have a 12 yr.old boy who was born with a unilateral cleft lip and bilateral cleft palate. We just went through jaw distraction surgery this past May. I am from Iowa and go to the University of Iowa Hospital and Clinics for all of Jordan's care. If you have any questions, please feel free to ask them. Your daughter is beautiful, by the way. Tammi

Ashley - posted on 01/25/2009

That's what this is for!! Your daughter is beautiful!! I also have a little girl that is 17 months old and was born with both cleft lip and palate! First time mom and didn't know til the day I had her! But it has been a great learning experience. If you need anything or have any questions you can talk to me!

ashley06makiah@aol.com