Living with Q.22.11.2

I am writing this in hopes that there are others that I can connect with that have or have children that have the Q.22.11.2 micro duplication syndrome. When my husband and I decided to have a child we both knew there would be a 50/50 chance that it would be passed on to them because my husband found out a few years ago that he had it. Q.22.11.2 can cause a series of problems ranging from mild to severe. Right from the beginning after I found out I was pregnant the E.R. told me I was going to lose the pregnancy. Luckily they were proven wrong. About the middle of my pregnancy we had decided that we would go ahead and have an amnio to see if our little boy had the genetic disorder as well. The day I went in to have the procedure I was scared as hell! I didn’t want no needle going through my belly and certainly didn’t want nothing to happen to my baby boy. Needless to say the doctor decided it was too risky so it never got done. At that point we had to wait until after he was born to find out the outcome. Every ultrasound I had my husband always would say; “he has it” he thought that he could see in our sons face on ultrasound the features of Q.22. I thought he was crazy and told him that everything is fine, he doesn’t have It and won’t end up having that. After our son was born he had a hard time breathing and spent awhile in the NICU, he also had a hard time breastfeeding and later we did find out he had tongue tie but my little man was fighter and we both learned how to get the breastfeeding to work for the both of us and he’s still breastfeeding today! 🙂 We thought as soon as he was born that we would get a simple blood test for him and find out quickly. Unfortunately we ended having to wait about 3 months or so because they actually need to draw blood and have enough to send off and he was too small. We then had to wait an extra 2 weeks to get the final answer and we found out that sure enough he tested positive. Did it hit me like a ton of bricks? Absolutely not; I knew right from the beginning there could be that chance and I love him not matter what. Our little guy is almost a year old and so far so good nothing to the extreme has happened yet. 

If you have Q.22. or have a loved one with it and know of support groups or websites that I can get information please comment below. 🙂 I have not been able to find much information on the net and only 1 group out there with this info. It’s pretty rare so far so it’s hard to find information.

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