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Henry Merkle – Born October 2008

Henry was born premature at 34 weeks and despite numerous ultrasounds, his recessed jaw and cleft palate were never detected. It was a complete shock to us and he was whisked away to the NICU where they diagnosed him with moderate to severe PRS two weeks later. He was unable to breathe while lying on his back and re-positioning was not working so he had a jaw distraction at 4 weeks old. The surgery was nothing short of a miracle and he was able to breathe and we could see his tongue for the first time since he was born. We were able to finally bring him home after 6 long weeks in the NICU.

Learning to use the Haberman was tricky and we dealt with many of the other common PRS issues. The first year of his life was spent in doctor’s offices and hooked up to monitors and tubes. Henry had one of the largest cleft palates the plastic surgeon had dealt with so we were prepared for the possibility of multiple surgeries to close it. A small fistula developed and we waited to see what affect this would have on his speech. Henry started speech therapy right away and after he graduated from the Birth to Three program, he was evaluated again and his speech delay was considered severe. More discussions took place on whether additional surgery would be needed on his palate and we began intensive speech therapy.

Now Henry is 4 1/2 years old and after his most recent Cleft Palate Clinic, his plastic surgeon said Henry has “won the battle” against PRS. He received high scores on his speech evaluation and no longer needs speech therapy or additional surgeries on his palate. His jaw alignment is great and his bottom jaw continues to grow in proportion with his upper jaw. He passed his hearing test but may need another set of tubes down the road as well as some dental work due to crowded teeth. We are so proud of Henry and all that he has overcome and wanted to share his story with other parents who are dealing with the same issues.

It was a long, hard road but we all have grown from this experience and learned to appreciate even the smallest blessings in life.