Liam's Cleft Journey

 

Welcome to Liam’s Cleft Journey! 

 

Liam was born with bilateral cleft lip and palate. He was so perfect. We started taping his lip at 2 days old. 2 weeks old Liam received his NAM device. It was one of the hardest things for us. It caused a a lot of pain because it was pulling his cleft palate together. He would go on hunger strikes. The NAM definitely did it’s job though, his cleft went from 17mm to 9mm! 1 month old Liam got his nasal elevator. This helped hold up his nostril and also help shape it. Often with cleft lip the nostril will collapse and flatten. Liam wore the nasal elevator for 9 whole months! 

 

3 months old Liam had his first surgery and received his forever smile. This was one of the hardest days of our lives. We weren’t prepared to say goodbye to his cleft smile. It was very bittersweet. We had fallen so in love with it. Liam had a very hard recovery and was in the hospital for 5 days instead of the anticipated 1 day hospital stay.

 

10 months old Liam has palate repair surgery. This was harder than we could have ever imagine. He refused to eat or drink anything. He was put on TPN. His weight went from 66% to 3% percentile. It was so heartbreaking to see him struggle so badly. We spent 20 days in the hospital.

 

Fast forward to now, Liam just had his 4th surgery last week. He’s had 2 swallow studies as well. They found an unknown bulge in his throat during his swallow study. He has a hard time swallowing thin foods and liquid. He also vomits anywhere from 10-25 times a day. The doctors are so confused and have never seen anything like it. We are preparing to send him back under anesthesia for the 5th time to get an MRI on his brain. We are desperate for answers. It’s so hard seeing Liam go through this. This cleft journey is the hardest thing we’ve ever had to go through but Liam is such a warrior. 

 Thank you.
Tayler Fuller
Liam's Mom

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


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