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Chromosome 16q Deletion - And Your Family

Updated on December 12, 2015

My Sunshine Beating all Expectations

At the local pool being even more cute.
At the local pool being even more cute. | Source

Chromosome 16 Deletion

I am speaking from first hand knowledge regarding chromosome 16 deletion. My daughter has a deletion of the 16q22.1 to q22.3 chromosome. What this means is she did not full develop or get the normal number of 46 chromosomes that the average normal human has. In the perfect world, there would be enough research and money for this chromosome to be identified fully and documented. Unfortunately research is still on going, and most geneticist, can only give us a estimate based on other deletions of what can or might happen to my daughter. You never care about some sort of disease or condition unless it affects you or someone you love, and on the third day my daughter was in the ICU, I am thankful that one of the doctors recognized her physical features with her ears, and nose had a pointed slant to them. To me, as she is today, she just looked like my beautiful baby girl. Having a chromosome condition, doesn't always mean your child will have a deformity. It takes a keen eyes and someone well trained to notice the features. My daughters fingers have an extra joint that allows her to move her hand around almost freely in any direction. Her growth is not as far along as other children her age, and she has special braces in her shoes She says a few words, but she is far behind when compared to other children. To me as a parent, that is ok, I will go at whatever pace my child needs to go in order to help her succeed. This Hubpage will be about the conditions related to her missing chromosome 16 deletion.. It took a lot for me to compile and find the various information on this genetic disorder. It cannot be cured. My daughter has a long list of various things that affects her, but she is as healthy as she can be, and she has made it to her 3rd birthday. Everyday I cherish her being a gift from God. The more info I find and research and programs and any other detail I find, related to Chromosome 16, I will add to this Hubpage. You don't care about something until it affects you, and this has affected thousands of babies every year, and some chromosome 16 deletions are worse than others. For other parents and Hubbers that may know of a friend or family member with the same missing chromosome, let them know about what you read today. Don't be afraid to educate yourself about a disorder. The more knowledge you have the better you will be for yourself and your loved one. My strong young 3 year old had heart surgery when she was about 9 months old, and she has a tiny device in her heart. That was at 9 months, she is now at 3 years old. She has beaten some odds and continues to improve, and she is improving my take on life and how I approach things. The list below doesn't mean all kids and children will develop any of the conditions. Some people go to live normal lives. Some people have a deletion and do not know it. The complex human body is very unique and everything happens for a reason. My daughter was meant to have this happen to her, and her father,(ME!!!) I was meant to spread this word about this condition to help other parents. Patience is something you have to learn. I have all the patience in the world for my young one. Her older sister has patience and her mother. Some people may not understand why she acts the way she acts sometimes but that's ok. Everybody that gets to know my 3 year old eventually find out she is bright smart, strong willed and very determined. And she will look at you crazy if she thinks something is wrong and you are treating her differently. She is and always will be my Sunshine.

What is chromosome 16?

Humans normally have 46 chromosomes in each cell, divided into 23 pairs. Two copies of chromosome 16, one copy inherited from each parent, form one of the pairs. Chromosome 16 spans about 89 million DNA building blocks. Chromosome 16 contains between 850 and 1,200 genes.

Genes on chromosome 16 are among the estimated 20,000 to 25,000 total genes in the human genome.

These conditions are related to genes on chromosome 16:

Update Dec. 2015

She is 6 years old, and enjoys school, has friends, but still has her struggles. She is in the special needs program for her school district, and will always need help for the rest of her life, but she is doing the best she can, and her unique special ways improves the lives of everyone around her. She is a clean freak! Yes I call my little one a clean freak! If you dare leave something behind, on the table, or leave a pillow on the couch, it better go with you after your done, or she will let you know! I love my Sunshine! I will update this more soon, but for those with a family member who has a chromosome deletion, have a open mind, and always keep it positive..... She is calling me now, cause I haven't checked on her soup yet! Haha I love this girl!


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      Casey 8 months ago

      Hi! My son has deletion at 16q22.1q22.3. He is 13 years old and is in special ed. He has several health issues involving respiratory and kidneys. I am interested in heart problems with this deletion because he has recently been having difficulty with his pulse ox levels and we are not sure why yet. I am worried it's his heart. If anyone who has experience with this please let me know what kind of heart problems so I can mention to our dr.

      Also-- when my son was first diagnosed years ago they told me he has high risk of a stomach lining cancer with this gene. We had consult with oncology and then they will see him yearly starting at age 15.

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      Laura S. 10 months ago

      My daughter has 16q22.1q22.2 deletion DE Novo she is 14months and is the joy of a lifetime. She has a lot against her. Born with several birth defects and also her hearing is impaired. We are not alone!

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      Keeleyc 22 months ago

      My son now aged 4 also has 16q 22.1 deletion syndrome. We have had some horrible scary times with him but he is doing ok now. He has profound learning disabilities, cannot talk or walk, but crawls and is pulling up to standing. I can be emailed on

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      Tiffney hopwood 22 months ago

      My child has a long arm deletion 16 22.1. Docs have no advice on this. Anyone have any advice or info at all? Please and thank you.

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      nssmani 3 years ago

      hi. u r right about the child’s reactions. I have a son who is with 16 q deletion. he is now 25 yrs. He has undergone one open heart surgery and two ear surgeries. he has speech and also hearing impairment apart frm mental retardation. But he  is a darling of our family, meticulous and perfect. if further information is required i will be glad to share.

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      Malay 4 years ago

      A woman with chromosome 16 deletion - will her children have the same problem???

    • JSimple profile image

      JSimple 5 years ago from World Wide Web, I'm Right Here On Your Screen!

      sure I would love to read about it

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      Nancyjeanmiller 5 years ago

      Thank u for making this page! My daughter is 6 1/2. She has 16q 11.2-12.2 microdeletion she was written up in a medical journal that I can share with u!

    • JSimple profile image

      JSimple 5 years ago from World Wide Web, I'm Right Here On Your Screen!

      Hey, thank you for responding, I will email you.

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      logansites 5 years ago

      I was wondering what the status is of your little girl. We just found out today that our daughter has the same thing? You can email me at