This is about my experience and feelings of having a child with a bilateral cleft lip and palate.

When my partner and i found out that we were expecting i was over the moon as this was going to be my first and my partners third, all was going

well up until my 16 week ultra sound, we were told the baby had a common facial deformity, my heart dropped i could'nt understand what was happing as up until then we were told he was big and healthy.  They sent us to the women's and children's hospital in adelaide for a 3D ultra sound to determine the severity of his cleft lip.  We were told it was a minor deformity and was easily repaired, then when we went to my Dr to get our referal for the hospital we were told the real out come and possibilities of not just his lip but also his palate. (roof of his mouth)

We went down for the 3D scan and was confirmed he had a bilteral cleft lip and palate, but we would not know the severity of his palate until he was born which at this point i was'nt really sure what they meant, i was 22 weeks, after the scan i had to wait to see a specialist i cant really remember because most of it was not sinking in, it seem to all be happing so quick when we saw the specialist we were told this condition and a couple of other thing which they would not normally worry about increases his chance of down syndrome and that i need to have an amneo  needle done there and then due to me being right at 22 weeks the test takes 2 weeks to come back. My partner and i had previously decided that if any test came back high risk for down syndrome we were not going to go through with it, i know some ppl may not agree with this but a child cost a lot to bring up anyway let alone having the costs involved with raising a down syndrome child.

I was so over whelmed with finding out about my child's facial deformity not knowing what will be able to be done but now that i may have to possible abort my unborn child at 24 weeks, this all happened over the christmas break so our christmas and new years was not a happy one we were preparing our selfs for the worst as every time we had possible good new it was followed with worse. I was not coping with my emotions very well i had alot of support from family and friends which i am so greatfull  for they will never know how much.

They results were good news which filled me relief but could not stop myself from expecting to hear more bad new at some point.  We look up his condition because we had not heard off or knew what he may look like as bilateral is more sever than a unilateral and the fact that 1 in 700-800 babies are born with this deformity. We had alot of appointment with the hospital and the cranial facial unit before he was born to explain how he will look and the possible problem he may have with feeding as he was going to have no palate meaning from his nose to his throat was going to be open making it not possible for him to suck.  This whole time it was a blur for me as i felt overwhelmed and was starting to worry if i was going to refuse my child because of how he looked, it was tearing me up inside.

They day/evening arrived with no complications a quick and natural birth which i was thrilled about they placed him on me i saw his lip it wasnt as bad as what i was expecting then i only saw his eyes from there on, he was my boy :)

He had to be kept down in the special baby unit due to learning how to feed him because he had no palate,except he did have the centre bit running down the back which meant he had the sucking action but could not get suction due to not have the side parts, but it was great because it made it easy to feed him we just had to squeeze his bottle as he was trying to suck. I was so proud of him it all went well we came home and he was smothered by everyone, spoilt little man. I didnt know if i was going to be able to cope having a child with this deformity but i felt lucky to because i knew there are some babies that are far worse off than him, u know its true u find a way and cope no matter how hard it is.

He gained weight well and had his lip repair surgery at 3 months old we was remarkable a total new looking baby i was kinda sad because he looked so cute as he was but it need to be done, he recovery so well he was in hospital only 2 days then came home, the cranial facial surgeon that did his op did an amazing job u can hardly tell he had it, i was not sure how he may go teething as maybe it might be more painful but he is teething as normal i think lol.

He is having his palate surgery done on 23rd Dec this year he will be 9 months and im sure it will go as well as his last the surgeon thinks he will come home on christmas day which would be nice but will wait and see.  My nerves arnt so bad any more but it will be hard to see him after his surgery that is the hardest part, he is going to have to have more corrective surgery up until the age of about 20 yrs old, but it will make us both strong, ive taken many pic of him before his lip was fixed so he can see when he is old enough to understand as if he has children it is very likley that they will be born with it.

Thanks for letting me tell my story and thoughts xox