Cleft patients may require many years of treatment. Treatments needed vary depending on the cleft condition. Your child may need a few of the range of treatments but probably won’t need all of them.

Timing of repair can depend on baby’s growth / health / tissue growth / severity of the cleft / hospital schedules / surgeon schedules / availability of beds and surgery time. Surgery in incredibly scary for parents but remember there is lots of support available.

• Cleft lip is usually repaired at 3-4 months
• Cleft palate is usually repaired at 6-12 months of age

Later surgeries may include

• Grommets (tubes in the ears)
• Fistula repairs
• Pharyngoplasty
• Scar tissue reviews
• Bone grafts
• Jaw surgery
• Rhinoplasty

Remember, your child may need a few of the range of treatments but probably won’t need all of them.

Rebecca says: Handing him over wasn’t as hard as I thought it would be. They recommended that we didn’t go in with Ezekiel to be put to sleep because he was only three months old and because he wasn’t crying when they took him, I didn’t cry either. We went for a walk and had a cuppa at the cafeteria and kept busy. The time went quite fast. I trusted that my baby was in safe hands and we would be back with him soon.

I loved my baby’s new face, but I loved his old one just as much. One of the worst parts was feeling like we didn’t get enough photos of his cleft lip. The saddest part for me was his last quiet snuggly bottle on the morning of surgery, knowing what he was about to go through and that it would be the last time I would feed him with his cleft lip. I could hardly see through my tears. Also the first 24 hours after surgery were awful, he was given morphine & Panadol just to settle him for a short time. I had to escape for a few minutes to cry, it was hard to be strong at that time.

I was very happy that my baby could now close his mouth around his bottle. But the best part was taking our baby home where he belongs to show off his new smile to his big brothers and big sister, which he did!

Faye says: When he was eight months old Aidan had palate surgery. I stayed with him while he was put to sleep, then I had to trust that he was in good hands with our surgeon. I asked the anesthetist to take good care of my baby.  He assured me that he would fine. I walked out to the waiting room when the tears came. I didn’t know what to expect, would he be ok? Why did I have to put my baby through this?  What had I done to deserve this?  What had Aidan done? Two and a half hours later our surgeon came into the waiting room and told us that everything had gone well and Aidan was in recovery.  He had discovered that Aidan’s hard palate had a slight notch out of the back of it, but he did not believe this would cause any issues. I now anxiously waited for our names to be called so we could go in to see Aidan.

When I saw my baby, his face was a bit swollen, he had a large stitch through his tongue which was taped to his cheek.  This was to keep his tongue forward and away from any swelling in his mouth. Aidan was very upset and crying – he had come out of the anesthetic before his morphine drip had been set up, so he was in pain and distressed.  I just wanted to hold him, to make him feel better, to let him know I was there. That first night was pretty terrible.  He was unsettled and wouldn’t sleep.  I think I got about 3 hours sleep in 36 hours. I’d snuggle him on the bed with me and get him to sleep, put him back in the cot and be just dozing off myself when he’d wake up again. The following day, the stitch was taken out of his tongue, he had a bottle, and was much more settled, if a bit sleepy.

Later we made the decision that I would go home that night, leaving Aidan at the hospital.  I was exhausted and in desperate need of a good night’s sleep.  The staff assured me that if there was any problems they would call me and I was welcome to call at any time to check on Aidan. I cried as we left the hospital, but I needed to be well rested to take care of him when he came home the next day. I rang about 9pm to check on him and was told he was sound asleep and everything was ok. The following day when I got to the 4th floor, I found Aidan happily sitting on the knee of a lovely nurse, playing. I remember thinking you little ratbag, you’ve had me worried and here you are like nothing’s happened.