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Living with Mosaic Trisomy 22

Updated on April 3, 2020
AlexiaLynn profile image

I am the mother of a child with a rare chromosome abnormality and taking on each day one moment at a time. Walkthrough our journey with me.

Mosaic Trisomy 22: My daughter's life long adventure.

Mosaic Trisomy 22 is a tough diagnosis let me help.

The purpose of this web page will be to help give parents that sense that they are not alone. It has been a rocky road, but every day seems to gets better. Every smile takes my heart and grasps it harder and harder knowing that my child beat the odds and has become one of the strongest people I know. I want to be able to create an atmosphere for parents who hear the heart-wrenching words that their child has a chromosome disorder the hospital near them has never seen and make it livable. I am always open for discussion, conversation, or any questions.

The path in life is just a journey. Grasp it and hold on to it. Always remember the stronger your faith, the healthier you and your child will be. When things get rough find that one person you can lean on and don't let go until you can stand up and go full force.


Your faith is all you have, let it grow, reproduce and flow into the lives of the people you love.

What to expect:

The research I have obtained about Mosaic Trisomy 22

Mosaic Trisomy 22 is a rare chromosome disorder in which the 22 chromosome is present 3 times. The typical chromosome would have only 2 cells in it. The severity of this chromosome disorder will vary depending on how many cells throughout the body will obtain these mosaic chromosomes. Here is a list of some clinical features that have been recorded in Mosaic Trisomy 22 patients:

- Microcephaly

- Abnormal Ears

- Webbed Neck

- Cardiac Abnormalities

- Long Fingers

- Kidney Problems (Missing, Extra, or Underdeveloped)

- Growth Retardation (Which I have seen in my daughter, although she is catching up quickly)

- Shortened Limbs (My daughters' legs are slightly smaller than average)

- Mental Delay

- Hemidystrophy (abnormal development of each side of the body)

- Drooping Eyelids

- Elbow Malformations

- Abnormal or/ missing fingers/ toenails

- Absent Ovaries/ fallopian tubes

- Underdeveloped testes or ovaries

This list is not a complete list and was obtained from

If you are pregnant and just finding out that your baby has Mosaic Trisomy 22 I would suggest making sure that you are asking all of the questions you can think of to make an informed decision about your baby's healthcare.

During my pregnancy, I made it clear that I did not want to terminate. If that is something that you would like than that is your decision and the hospital should oblige. There is no right or wrong answer in how we handle the news of our child. Take some time to think about what your future may hold.

Abortion

Abortion is real. Its devastating. Weigh your options. There is always hope.

Her Medical Diagnoses

I would like to personally let everyone know what exactly is my daughters medical diagnoses:

1: Mosaic Trisomy 22

2. Dandy-Walker Malformation ( a Cyst blocking the cerebellum from growth)

3. VSD: Ventricle septal Defect Or in Non Medical terms she has a hole in her heart)

4. Sacral Dimple: above the buttox

5. Hydrocephalus:

6. GERD: acid reflux

7. Asthma

8. Chronic Congestive Cough: not related to asthma!

9. Partial Duplication of chromosome 1

10. Possible Autism

11. VP shunt with a Dual Catheter

12. ASD: Atrial Septal Defect (repaired in 2016)

13. Anxiety

14. Depression

This is just a list of her medical diagnoses. This is a child with many years of therapy (speech therapy, occupational therapy, and physical therapy.) Alexia has flourished with this assistance.

Photo Gallery

Facial Shot.
Facial Shot.
Lastest Photo by Kiere Keil
Lastest Photo by Kiere Keil

The song that would make the world stop for Alexia

This is the song I would sing to Alexia and still do. This song would stop her in her tracks as there were medical procedures going on. Alexia is such a beautiful girl and this song will follow her forever.

Good Morning Beautiful By: Steve Holy

Just an update!

Alexia is now in 4th grade and 10 years old. She is an amazing artist and is in love with the history of our world. She is one of the smartest kids in her classroom and she is on a neverending road to success.

Leave a comment for everyone to see that you have been here!

This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.

© 2012 AlexiaLynn

Guestbook Comments - Please leave a comment

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    • AlexiaLynn profile imageAUTHOR

      AlexiaLynn 

      6 years ago

      @rebekahdena: Hi there, I am sorry about your baby's father. My daughters father walked away from us as well. It is a terrifying feeling. Please feel free to join our group on Facebook. Just look up mosaic trisomy 22. We all look forward to helping you on your journey

    • profile image

      rebekahdena 

      6 years ago

      sorry if this post shows twice.

      I am 18 weeks pregnant with my 1st child, I am 39yrs old from Adelaide, Australia, the father is 40yrs old from west africa. I have my 12wk nuchel scan and baby was normal, but blood test came back 1:7 chance of down syndrome. Had amnio at 16wks, preliminary results were normal and it's a boy :), further testing showed no down syndrome but it also showed Trisomy 22 mosaicism. Have just come back from hospital after being told.

      From the moment i told the father, he wanted nothing to do with pregnancy or baby, so doing it all alone.

      Your daughter is amazing and so very beautiful.

      Take care :)

    • profile image

      rebekahdena 

      6 years ago

      I have just come from the hospital, I am in Adelaide, South Australia. I had my nuchel scan at 12 weeks which was normal but blood test showed 1:7 chance of down syndrome. I chose to have amnio at 16ish weeks, preliminary results showed normal, further testing showed Trisomy 22 Mosaicism, I am now currently 18 weeks. It has been confirmed that i am having a boy, i am 39 years old caucasian, father is 40 years old and from west africa. I am also doing all of this alone as from the moment i told the father i was pregnant he didn't want anything to do with it.

      Your daughter is beautiful and amazing!

      Take care :)

    • AlexiaLynn profile imageAUTHOR

      AlexiaLynn 

      7 years ago

      @anonymous: I would be more then willing to. Email me at jenniferadamy@gmail.com and i will give you my cell number from there! Keep your head up.

    • profile image

      anonymous 

      7 years ago

      I was wondering if I can speak to you. I just found out about my child having this diagnosis.

    • AlexiaLynn profile imageAUTHOR

      AlexiaLynn 

      8 years ago

      @anonymous: Doctors are the worst advocate. Have very strong faith for not only yourself but for your baby as well. My amnio showed 40% mosaic trisomy 22 i told the doctors when she crys i dont want to here a word all i heard were her crys. Im here for you. Feel free to email me at jenniferadamy@gmail.com.

    • profile image

      anonymous 

      8 years ago

      hi i just do the ultrasound and the do said that my baby is trisomie 22 he suggest to me to do amniocentesis and the result that my baby is trisomie 22 but i have to wait until next wensday for the final result and the doctor said all babies can't live even after the birth and i m verry scared if you can help me please

    • profile image

      anonymous 

      8 years ago

      She is such a sweetheart! My son was born with mosaic trisomy 22 as well! Are you a member of the mt22 facebook group as well? If not, you should join us! https://www.facebook.com/#!/groups/177391992290377/

    • TTMall profile image

      TTMall 

      8 years ago

      Great lens subject! Thanks for sharing!

    • AlexiaLynn profile imageAUTHOR

      AlexiaLynn 

      8 years ago

      @CTsHeart: Thank you, Faith comes with the love for our father. Without knowing what he is capable of we have nothing. Since I have accepted him into our lives, I have not struggled.

    • profile image

      CTsHeart 

      8 years ago

      What a beautiful angel! Your strength is amazing and I admire your faith, determination, and heart. Your children are so very blessed to have you!

    • AlexiaLynn profile imageAUTHOR

      AlexiaLynn 

      8 years ago

      @anonymous: Thank you. This is a very rare chromosome disorder and want to give parents hope instead of having them assume the worst.

    • AlexiaLynn profile imageAUTHOR

      AlexiaLynn 

      8 years ago

      @jordanmilesbask: Thank you. Everyday I wake up and thank god that she is alive, well and my own little miracle in this crazy world we live in. She is definitely a high light in my life.

    • profile image

      anonymous 

      8 years ago

      great lens and beautiful girl

    • jordanmilesbask profile image

      jordanmilesbask 

      8 years ago

      This is the first time I heard of mosaic trisomy 22.. You have a beautiful child and its great to hear that she's getting better and going really strong... Thanks for sharing and God bless you and your child always...

    • profile image

      anonymous 

      8 years ago

      This is my Granddaughter, my daughter has made a web page on her disorders and conditions which doctors and specialist guaranteed if she went full term and had a live birth she wouldnât live past 2-3 days, she will be 2 on Feb 15th 2012 and has hit so many milestones we had no guarantee she would of been able to do. We are never âout of the woodsâ with certain issues with her and we still hold our breath when she gets sick but she really and truly is a blessing from god and full of happiness and life we treasure every moment with her.

    • profile image

      anonymous 

      8 years ago

      love it!

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