When the genetics specialist come by to talk to us he mentioned that Ty might have B.O.R. Syndrome. WHAT? Branchio-oto-renal syndrome is a dominant gene and can occur 1 in 40,000 people. Some of the symptoms have been reported to be hearing loss, ear pits, deformed ear, ear tags, branchial (neck) cyst or fistulas, kidney problems and many other symptoms have been reported but are not common. Individuals with the syndrome do not have every symptom you. It varies with each individual.
In Ty's case, he does have the syndrome. He has 2 out of 3 areas that are affected. He has mild to moderate hearing loss, pits in the ears (as seen above), was born without one kidney and the other a third of the size it should be. As far as anything being wrong with his neck nothing has been detected. Thank you God!
So now the question is how did Ty get this. Well, I (Megan) have symptoms of syndrome. I have the holes in both ears and had a cyst removed from my neck when I was young. As far as any kidney issues, none. My brother has the same symptoms as I and we never knew anything until Ty's issue come out.
So the chance of this happening again is 50:50. How do we prevent it? Either we don't have anymore babies or IVF (In Vitro Fertilization).
Being a new mother and finding out that your son has a syndrome and that he received the syndrome from you, that messes with you mentally. I know I couldn't help it but knowing I could have prevented it, makes me so mad at myself sometimes. There were times I would whisper in Ty's ear "I'm so sorry, Mommy is so sorry" and tears falling on his face. That will probably be one of the hardest things to get over but I'm getting there, slowly but surely.
It's just one of those things that "in time" will heal itself. We know God is in control and He gave Ty to us because He knows we will take care of him no matter what it takes. We wouldn't return him for a healthy baby any day because he wouldn't be the same. God has a plan, we may never know what it is but all we can do is be faithful and try our best.
God is Good!
4 comments:
Thinking of you all...you have a PRECIOUS precious baby boy, and God is going to use you through this to spread his word. Continue to be strong, trust in Him, and you'll see what amazing things he does through Ty!
I LOVE YOUR SITE MEG!! DON'T FORGET THAT WE LOVE YOU GUYS & YOU'RE DEFINITELY IN OUR PRAYERS!! GIVE "BOW TY" A KISS AND A HUG FROM US!!! **AND, YOU GOT IT GIRL....GOD IS GOOD!!!!**
Megan, thank you for continuing to share your story with all of us. Bless little Ty and your sweet hearts. You are such a loving, STRONG mother to a beautiful boy.
Hi!! We just adopted our DD from China. She was just diagnosed with hearing loss last week. THen this week the nurse practictioner mentioned that she had ear pits and that we should get an ultrasound. We go on 4/2 for the ultrasound. Would you mind talking with me via email? I am nervous about what this means to her kidneys specifically. My DD was born 10/5/2010 so close to your son!!
God is Good, I love your post!!
CHristy LIllie
christy@elillie.com
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