As with any child you are going to worry about their development, but especially so when your child is already facing challenges due to their being cleft affected. Your child’s hearing is going to be another ongoing aspect of care you are going to need to be diligent about, which is why an ENT is an integral part of your Cleft Palate Team.
Our son showed signs of hearing loss as early as 2 mos. of age when we first noticed that he was not responding to our dog barking, the telephone ringing or loud knocks at the door. It was determined that he had fluid build up in the middle ear directly related to the cleft palate. He received his first set of PE tubes at 3 mos. of age during his cleft lip repair surgery. The ENT informed us that he had cleaned his ears out and immediately the fluid began draining after the placement of the PE tubes. When we brought him home there was a marked difference in his hearing and we were relieved to hear him cry when the dog barking startled him!
Over time his PE tubes would begin to fall out and we would experience a fussy baby showing signs of an impending ear infection. He would rub his ears, have a slight fever, want to be held all the time (that one wasn’t so bad) and just did not feel right. Another trip to the doctor’s office would confirm what we already knew and antibiotics would be prescribed. Sometimes the antibiotics worked but as a long term solution they just did not; and it was back to the ENT to schedule another PE tube surgery so that we could clear up the infection and quell our fears of hearing loss.
The ENT would do a hearing test before and after his PE tube surgeries and it was always a little scary during the pre-surgical hearing test because you could obviously see the hearing loss while his ears had fluid build up. I would feel a pit in my stomach up until after the surgery when they redid the hearing test and we could see that he was responding once again to both low and high frequency sounds.
The first 5 years of our son’s life were a constant battle with his ears. His tubes would last about 10 mos. before they started to fall out. During that grace period of no infections we were grateful (except when he caught a cold) because undoubtedly that meant an ear infection. His ears just seemed to be such a weak point for him.
I suggest you remain vigilant in your child’s care and make sure to see your ENT at every cleft clinic visit to make sure the tubes are still in and working properly and that there is no fluid build up. Be sure to request a hearing test if your ENT has not already suggested one so that you can have a baseline for your child’s hearing progress throughout their surgical journey.
For further reading on how we protect our son’s ears now that he no longer has PE tubes please see my following blog posts and reference material available: