So today is another step back. As with a good portion of babies born with VSD Riley has what is known as 22q11.2 deletion syndrome. The most common characteristic found with 22q (as we are going to be calling it) is VSD and other heart malformation disorders, so Riley is a check on that.
- 69% of 22q folks have palatal abnormalities - as of right now, the multiple people who have checked Riley Rose say that they feel a normal palate, but things could show up later or below the skin that they can feel now. The palatal abnormalities can lead to feeding problems and speech disorders.
- 70-90% have learning difficulties - this can be everything from simple reading comprehension to severe learning imparement. We obviously won't know about this till much later on.
- 77% have immune deficiency problems. This is due to them potentially being born without a Thymus. The Thymus is the part of a babies body that helps fight off infections while the rest of the body starts to develop ways to develop immunities. The Thymus actually shrinks and goes away over time, but when the children are young they are at a serious risk for many severe infections.
- 50% have hypocalcemia which is the body being unable to process calcium correctly. This leads to seizures and skeletal abnormalities. Supposedly Riley is processing calcium fine at the moment, so this may be one of the few pieces of good news right now.
- 37% have renal anomalies
- then there are some leftovers of potential hearing loss, growth hormone deficiency, autism, facial deformation and over 200 other issues.
Michele is being the strong one today as I have lost all comprehension of how to handle Riley's future. My concern is not for Riley as she will be who she is, but with my abilities as a father and how I am going to handle this. I am not known as having a ton of patience and I am struggling to help Zoey learn things as I can get frustrated - if my little flower has a learning disability I do not know how I will be as her father. I will certainly do my best, but I do not currently believe that my best is anywhere good enough. I will lean on my wife a great deal during this time, but I have serious self doubt. I am also scared for Riley - as a parent you have hopes for your child. These are already tough enough to reach as children and our society are awful to anything that is different. It could be as simple as a name, a speech issue, a birth mark and Riley may have speech issues and a facial deformation. How will I explain to her how horrible the world is going to be to her, just because she is different? I am hoping I somehow find these answers, although the darkness that is around my heart at the moment makes it awfully tough to see any light, nevermind the tunnel that my little one is in.
ok, I hope whoever is feeding you this info is just trying to give yoiu worst case scenario. It seems like an awful lot of "possibilities" to worry about. Please try not to cross any of those bridges until and IF you come to them. As a teacher/therapist of children with disabilities, I beg you, please do not fret! If, and I do mean, IF, Riley exhibits any disabilities, there are sooooo many resources to help her (lucky her, she already has a great-aunt who is an SLP). She also has two intelligent, proactive parents who will make sure she gets all teh help she will need. So, I beg you, take a breath and just deal with today for now. :)
ReplyDeleteLove, and all good thoughts for all of you!
Aunt Joanne xoxo
This is a "one day at a time" challenge. Try to focus on what you are grateful for right now. Riley could end up very high on the abilities scale, and the most important thing a parent can do for their child(ren) is to make sure they know they are loved. Obviously, that is something you and Michele are very good at. So.. have faith in yourself as a parent. Of course, one thing parents are very good at is worrying- but try to not worry about things that may not even happen. I hope this doesn't sound flippant- I am being very sincere and love you all very much.
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