Byron

My 2 1/2 year old son was born with a vsd (hole in the heart) which was operated on and repaired at 3 weeks of age after going into heart failure at 2weeks old. He has always been a sickly child with a lot of hospital admissions for viral infections. At birth he seemed to have a unsemetrical face with a small mouth and one side of his face tended to slope inwards from his jaw to his chin. His ears were very flat at birth and on the side the face was sloping i had to peel his ear off the side of his head and it was like paper. He had trouble feeding and just couldn't get his sucking together, eventually needing me to use a nipple shield for him to be able to feed. Byron was born 6lb 1oz and we expected him to be small for some time due to his heart operation but he has continued to be quite small and is 11.5kg at the moment. Byrons head is also ill shaped. Byron's large motor skills are exceptional and has no trouble with ball play, kicking, catching and balance his fine motor skills are also above par and is holding a pencil and drawing with the correct grasp. Byron has had a lot of trouble with speech and at 2 was still only saying mum and Dad. We had a hearing test done at 2 years of age (without the headphones) which he passed but failed the test for the pressure in the ear. I took him back for a review today (with the headphones) and they told me he has no hearing at all in his right ear and limited hearing in his left ear. And told to go back to his peadetrician to be referred further on. He has already been tested for 22Q11 deletion asked for by his cardiologist as he could see the same facial deformations that I mentioned above, however the test came back negative. My question is I have a very strong feeling that all of the symptoms I see in Byron are part of a syndrome but WHAT!!!! does anyone have any ideas for me to take to the peadeatrician.
Thanks Tania.  

[Cleveland Mom]

He is quite young in the scheme of things and has been through alot in terms of the medical issues he has experienced.  His motor skills, both gross and fine are very good.  As for his language it seems clear that the delay is deal to his hearing impairment.  Nothing in this post indicates that he has any difficulites with cognitive/mental functioning.  Please note, that language development is separate from cognitive development i.e. there are children who develop appropriately cognitively but have delayed language development, often times for unknown reasons.  In your son't case it seem to be clear, again that the delay in his language development is due to a hearing impairment.   Have you had him evaluated by a speech/language pathologist to help him with language development? What are the recommendations from the physicians and audiologist regarding his hearing impairment.  In short, he is doing quite well developmentally.  I would accept the results of the chromosomal testing, he seems to be developing well despite a rough beginning.

Best wishes...

[LukeL]

Look up Goldenhar Syndrome