Hello to all. I am new here

Emily - posted on 08/13/2009

On another note, I think that plastics is the most under-appreciated specialty in all of medicine. On the plastics floor at our paediatric hospital, all of the children are either burn victims or have facial differences; what more altruistic work is there?!

Monica - posted on 08/12/2009

congratulations on you new baby boy. I understand completely about the tears. My daughter was born in July 2008 with a bilateral cleft lip and a unilateral cleft in her hard pallet. We did not know before hand about it. It really upset me more that for the first 15 mins the doctor would not let me see my daughter, but the min I was left alone I balded my eyes out. Then I sucked it up and started making calls. The hospital I delivered in was a small hospital and had never had a cleft baby born in it before. No on knew what to do, but the doctors and nurses were great, they called around and found a excellent team of doctors for us. The first surgery is the worse, and everyone is right it is harder on the parents than the kids. It is really overwhelming at first, but it does get easier. Just take it one day at a time. Delores has had 2 surgeries so far, both of those were to repair her lip. At some point they will do her pallet. The doctors are having a harder time with that, a cleft in the hard pallet apparently is unusual and a lot harder to repair. They keep postponing that surgery. I've learned to just take things as the come. The doctors know whats best for her and they do wonderful work. That is the best advice I can give: it does get easier and just take everything as it comes. Welcome to a very special club.

Emily - posted on 08/09/2009

Hi Elizabeth!
Firstly, welcome and congratulations on your baby boy!
My little guy (Ari) was born last year with an incomplete bilateral cleft lip and a suspected sub-mucosal cleft (the muscle above the palate). My husband was born with a complete bilateral cleft lip and palate in '74. Ari has had one surgery (at 4 1/2 months) to repair the lip and may need more. My husband had 9 surgeries. We also didn't know that our baby had a cleft prior to birth although we knew there was a possibility.
I know it's scary to send your baby into surgery but (as a friend of mine who is a doctor said) this kind of surgery is their bread and butter. The cleft team at our children's hospital is so amazing. They work together unbelievably well; it's a complex and beautiful choreography. Genetics, speech, audiology, ENT, plastics, nursing, anaesthesiologists, etc.... they do a wonderful job. Don't be afraid to ask lots of questions - make sure you feel well informed, that helps you keep the anxiety at bay. Make sure you have lots of support lined up for the weeks after the surgery... you're going to need help and a few breaks. This group is also great for finding experienced parents with great information and support... I also agree with Robyn: you miss the wide smile when it's gone!

Malinda - posted on 08/01/2009

Congratulations on your Baby Boy!!!! My youngest(now 6) was born with a Complete Bilateral Cleft Lip/Cleft Palate. When I found out i was pregnant with her i had passed out at work and was sent to the hospital to be checked out. They did an ultrasound and told me and my boyfriend (Husband Now) that i was pregnant and it was a girl, they she left the room and brought in a Doctor to review the pictures and i went from an external ultrasound to an internal ultrasound. they told us after ten minutes of pointing and whispering that they thought she has a tumor on her nose and i had to go see a specialist.. the specialist told us that she had an incomplete cleft lip and it wasn't anything to worry about. We had no idea what that was so we started researching it alittle to kinda prepare for her arrival. Well the day she was born my heart broke in two. I was in complete shock that it looked so much worse then we expected. I cried for hours. We had to feed her with a bottle that had a long tube on it so it went down her throat far enough that it didn't go out her nose. the roof of her mouth was completely open so everything that went in her mouth come out her nose, she dropped 7 ounces over night and had to stay 2 days longer. At the time we brought her home we where renting a 6 bedroom house with 2 of our good friends and my husband let them know the day before we came home that i was very sensitive about it and to kinda watch what they said, cause i was going off on people just for looking at her weird. It took me almost a month to calm down enough to take her to the store with us without worrying i would snap at the first person to even look at her funny.That was my babygirl and i wasn't gonna let anyone say anything to hurt her...I was pretty bad looking back at it now.. at 4 months she had her first surgery at the Shriners Hospital to repair the cleft lip. They where Great!! answered every question we had with terms normal people can understand. Her surgery was 4 1/2 hours long which seemed like a week to me i paced outside the surgery doors the whole time she was in there. I was scared she'd be in so much pain, and everything that could go wrong i thought of. when i finally seen her she looked so different(after they cleaned all the blood off her). I started crying again and hugged the doctors and thanked them all. We stayed there for 3 days and she did great after afew weeks she got to drink out of regular bottle and once again i cried.. but since the roof of her mouth was still open things kept coming out her nose. after awhile it was kinda cute cause she would eat noodles and the noodle would come out her nose and just be hanging there. I started checking her nose everyday for things that shouldn't be there. I have removed almost everything imaginable from her nose. a spongebob bandaid, flower petals, grass, food, and even a small woodchip that she had got her hands on(that one had to be removed in the ER) and our insurance had a field day with it, cause they thought someone had shoved it in her nose and wanted them to pay for it. Faith will be 7 in september and has had 3 surgeries. 1 to repair the lip at 4 months, the second to close the palate at 11 months and the 3rd last November to open up her nasil cavity on the left side cause the lip repair had pulled it over to the right alittle and closed off part of her nasil passage.She seems to bounce back quicker with every surgery. with the one she had last year as soon as her IV came out she was dressed, ate a peanut butter and jelly sandwich, chocolate milk, and was running around playing with every toy in the hospital, refused all pain medications completely shocked the nurses, doctors, and other parents and children there, and about 6 hours after surgery because of how well she was doing they sent us home that night!! I can't tell you not to worry because every mother worries about their child being hurt and in pain it's part of being a mother, but try not to stress about it too much they can sense this. He's gonna be just fine!! Oh and Take pictures if you can because when they get older it helps when explaining to them about little scars on their lip and they can see what it looked like before. Faith loves to show her classmates the pictures and it helps other children to understand it alittle better too.. I wish you guys the best!! and just rememmber he'll be just fine!!

Melissa - posted on 07/31/2009

Congratulations on your baby boy! And welcome to the group!

My little man was born aug 26/08, with a unilateral cleft lip. We also had NO idea about cleft lips/palates and were in total shock when he was born. I can relate to being in shock and in tears. I think a lot of parents who didnt know about the condition before babies arrival go through that. I was screaming in my loving husbands face when the nurses were ignoring my questions about what was wrong with him. It's very scary to go through that, and then all the meetings and appointments with doctors that follow. It DOES get easier going to the appointments, and does get less over whelming, I promise.

Robyn is completely right, surgery at such a young age is worse on mom and dad than it is on baby. They dont remember a thing, and as long as mommy and daddy are there to take care of them, and hold them when they need a snuggle, they'll do great! There's lots of good advice on the threads about pre-surgery stress, once you get to that point.

The best advice I can give, it take it one day at a time. It affects everyone differently and takes everyone different amounts of time to adjust. Just step by step!

Robyn - posted on 07/30/2009

Congratulations on your baby boy! My oldest (3 1/2) was also born with a cleft lip/palate (severe wide unilateral). Trust me you will get through this! He is going to be the most amazing little boy in the world to you ; ) The surgery at this age is tougher on you than on him (I know easier said than to believe, but I have been there too).. he won't remember a thing! I actually mourned the cleft lip when it was repaired.. all of my son's expressions that he made pre surgery ; )

Robyn - posted on 07/30/2009

Congratulations on your baby boy! My oldest (3 1/2) was also born with a cleft lip/palate (severe wide unilateral). Trust me you will get through this! He is going to be the most amazing little boy in the world to you ; ) The surgery at this age is tougher on you than on him (I know easier said than to believe, but I have been there too).. he won't remember a thing! I actually mourned the cleft lip when it was repaired.. all of my son's expressions that he made pre surgery ; )