Trisomy 18 or any form

Michele - posted on 01/31/2009 ( 15 moms have responded )

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Hi. I am looking connect with moms who have a child with a chromosome abnormality involving #18. Our daughter has partial trisomy 18 with an 8p deletion. She will be 3 in May and has beat every odd against her. She is learning cmunicates right now through sign langauge due to her speech delay(which is really her only deficit) She wears glasses, which are adorably cute!! I would love to share our story and hear from others with asimilar diagnosis. She was diagnosed at 6 months of age and I have gained a wealth of knowledge about the medical aspect since that time by consulting with geneticsts, neurologists, orthopaedists, counsleors, and any book or medical journal I can get my hands on. My best advice, don't compare your child to others you read about on the internet. each childs DNA is unique to them and just bc they may have an abnormality concerning 1 or 2 chromosomes....they have all of their other DNA "in order" and that can often compensate in many wys for the loss or gain of genetic material. I as terrified out daughter would be retarded, never walk, have a life threatening heart or kidney condition and on and on......She has none of the things I feared. The docotrs who told me that they would have advised e to abort her had we known in utero, now say she is an unexplainable miracle. She isn't unexplainable at all....she is however a MIRACLE, the explanation is GOD. Please conatct me if you are in a similar story or even if your child doesn't have something similar to my child. I was scared as many of you may be but my mission now is to tell toher sabout our Makena and give them hope becasue believe me, there is more hope than you realize if you just grab hold of it. I have been on both sides of the fence and I really want to meet other moms going through what all comes with finding out your child has "something" that isn't even documentated. Ther is a light in the tunnel. I would love to help you find yours.

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Kelly - posted on 12/03/2012

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Hi Michelle! I am Mom to Kayli, a happy little girl who is 3.5 years old and has Full Trisomy 18! I would like to invite you to connect with many more families among their own Trisomy Journey. Please join us on fb at www.facebook.com/alltrisomy.com or you can connect with us online at www.trisomyfamilies.org

Dawna - posted on 09/26/2009

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your child is truely a MIRACLE - i had a son in 2002 that was still born due to haven trisomy 18.

Kathy - posted on 04/23/2009

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My son has Partial Trisomy 16 Q @ 24.1 he just turned 15 yesterday (4/22) . He does just about everything that they said he'd never do and those things that he hasn't accomplished yet are comming along. He's about 6.5 years behind in some areas more in others. Its a tough road- but one I'm sure glad to be on.

Rebekka - posted on 02/18/2009

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Quoting Ellie:






Hunni,






My daughter Lucy ( princess poopy pants x) was born at 35 weeks with an undiagnosed condition..She had apnias, hypertonia an so many other things but suffice to say she was always a newborn..,she was so beautiful, big brown eyes an curly black hair..she faught for every day of her life an managed 2 and a half years, she passed away sept 07..I miss her every single day.






We had no idea that she would be born with any problems except that  my AFP levels were raised..all tests that we did after she was born were clear.






I am pregnant again an my afp levels are again raised...all scans show clear an the baby a girl is moving around a lot better than her sister did..we have everything crossed for a good out come but we know we will love our baby whatever.....I also have a 15yr old son who is fine and a 9yr old daughter who is also well.






Hunni I will tell u just one thing, only special families are given special babies..x





Hi Elli!



 



I am sorry that your daughter has passed, too but congratulations to your new pregnancy!! I wish you all the best, whatever the outcome will be. I am sure your daughter will be lovely!!!!



 



I guess your right only special families are given special babies... because they maybe need special love. you know in the beginging i was scared i could not love my nevin as much as he deserves but actually i love him more than i ever thought i would be able to love some one. i miss him so much and the time with him. it was not easy but the greatest i ever had. now i am scared that i will love him more than my babies to come :) but anything will work out fine i guess....

Ellie - posted on 02/18/2009

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Quoting Rebekka:

HI!
My son has Trisomy 13. He is the cutest baby i have ever seen and i could wish to have. I got the diagnose when i was in the 27th pregnany week. It was quite a shock. they said most babys die befor they are born or during birth giving or after. so I knew it could be over every day. It was a hard time but I also tried to enjoy every day because it could be the last with him. Because the babys with that diagnose die somewhen the docters said they would not do a sectio if his heartbeat is bad or so... i changed to the hospital i wanted to go to in the first play. there they would do anything I wanted. Well but there was no need i got bleedings in the end of 36 week so they had to do a sectio anyways. I saw Nevin the first time when he was 2 days. He did not breath on his own but he was the most beautiful baby i ever saw. so tiny and cute an perfect. at the age of 5 day he got extubated (??) so he only needed an ifant flwo. but still he had lots of troubles with breathing and turned quite often blue and needed aditonal CO2. so the got a hollow needle in his airway. it helped quite a lot but anyways at the age of 6 and a half week he died. the real reason nobody knows but his lungs were a litte week also because of his hard time before and multible infections and all. we knew he will die somewhen but it is hard. also because actually he was on his way home just 3 more weeks in intensive care or so... he is so perfect. i love my little boy and i miss him. i dont really fit into here because mine baby died but anyways... its nice to see i'm not the only one with a special lovely baby


Hunni,



My daughter Lucy ( princess poopy pants x) was born at 35 weeks with an undiagnosed condition..She had apnias, hypertonia an so many other things but suffice to say she was always a newborn..,she was so beautiful, big brown eyes an curly black hair..she faught for every day of her life an managed 2 and a half years, she passed away sept 07..I miss her every single day.



We had no idea that she would be born with any problems except that  my AFP levels were raised..all tests that we did after she was born were clear.



I am pregnant again an my afp levels are again raised...all scans show clear an the baby a girl is moving around a lot better than her sister did..we have everything crossed for a good out come but we know we will love our baby whatever.....I also have a 15yr old son who is fine and a 9yr old daughter who is also well.



Hunni I will tell u just one thing, only special families are given special babies..x

Velvet - posted on 02/14/2009

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Quoting Rebekka:

HI!
My son has Trisomy 13. He is the cutest baby i have ever seen and i could wish to have. I got the diagnose when i was in the 27th pregnany week. It was quite a shock. they said most babys die befor they are born or during birth giving or after. so I knew it could be over every day. It was a hard time but I also tried to enjoy every day because it could be the last with him. Because the babys with that diagnose die somewhen the docters said they would not do a sectio if his heartbeat is bad or so... i changed to the hospital i wanted to go to in the first play. there they would do anything I wanted. Well but there was no need i got bleedings in the end of 36 week so they had to do a sectio anyways. I saw Nevin the first time when he was 2 days. He did not breath on his own but he was the most beautiful baby i ever saw. so tiny and cute an perfect. at the age of 5 day he got extubated (??) so he only needed an ifant flwo. but still he had lots of troubles with breathing and turned quite often blue and needed aditonal CO2. so the got a hollow needle in his airway. it helped quite a lot but anyways at the age of 6 and a half week he died. the real reason nobody knows but his lungs were a litte week also because of his hard time before and multible infections and all. we knew he will die somewhen but it is hard. also because actually he was on his way home just 3 more weeks in intensive care or so... he is so perfect. i love my little boy and i miss him. i dont really fit into here because mine baby died but anyways... its nice to see i'm not the only one with a special lovely baby


Rebekka, I'm so glad you got to tell your baby how much you love him. Oh honey, he'll be in heaven with lots of love all around him and you'll see him again.  I'm so sorry for your loss.  I'm so sorry honey.  God bless you!


 

Velvet - posted on 02/14/2009

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I know a little girl who is almost 15 who has trisomy 18.  Her name is Abby and she's in my daughters lifeskills glass.  Her parents were told that she probably wouldn't see two years.  She's the oldest living child with this rare condition in the U.S.. Her mother says she is a miracle from God as well!  I live in Austin, TX.

Rebekka - posted on 02/11/2009

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To scared parents that get an upsetting diagnose i can just say. Its worth it to go through all the trouble and hard time with a "sick" baby. I can only speek for limited caring but yeah... i would not want to miss those weeks with my little boy and i would have loved to care for him at home though it would have been hard (in his worst times he alarmed every half hour and needed sometimes to be reanimated... but in the and not the tube helped so much). i guess its also a miracle that he lived for so long... because the most babys die in pregnancy but i would have wanted more.. i can not get enough of my boy!!

Tracy.. what kind of trisomy 13 does your daughter have? how is she?

Harriet - posted on 02/09/2009

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HI my son has a unique chromosonal abnormality which affects 18p, 19q & ?2
he has all round global & growth delays is basically a 2 yr old although hes really 9
Harriet

Jennifer - posted on 02/09/2009

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awe that is so sad. my little boy has trisomy 21 and is two now. we went through alot of hospitalization and alot of feeding tubes. if you ever want to talk let me know

Rebekka - posted on 02/09/2009

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HI!
My son has Trisomy 13. He is the cutest baby i have ever seen and i could wish to have. I got the diagnose when i was in the 27th pregnany week. It was quite a shock. they said most babys die befor they are born or during birth giving or after. so I knew it could be over every day. It was a hard time but I also tried to enjoy every day because it could be the last with him. Because the babys with that diagnose die somewhen the docters said they would not do a sectio if his heartbeat is bad or so... i changed to the hospital i wanted to go to in the first play. there they would do anything I wanted. Well but there was no need i got bleedings in the end of 36 week so they had to do a sectio anyways. I saw Nevin the first time when he was 2 days. He did not breath on his own but he was the most beautiful baby i ever saw. so tiny and cute an perfect. at the age of 5 day he got extubated (??) so he only needed an ifant flwo. but still he had lots of troubles with breathing and turned quite often blue and needed aditonal CO2. so the got a hollow needle in his airway. it helped quite a lot but anyways at the age of 6 and a half week he died. the real reason nobody knows but his lungs were a litte week also because of his hard time before and multible infections and all. we knew he will die somewhen but it is hard. also because actually he was on his way home just 3 more weeks in intensive care or so... he is so perfect. i love my little boy and i miss him. i dont really fit into here because mine baby died but anyways... its nice to see i'm not the only one with a special lovely baby

Jennifer - posted on 02/05/2009

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my son has trisomy 21. i found out a couple of hours after him being born. he is now a two year old, loves to mock and loves to sign. hes a wonderful little boy.

Tracy - posted on 02/05/2009

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Hi,
What age was your child diagnosed with her trisomy condition? My daughter was diagnosed with a "possible" trisomy 13 at 15 weeks pregnancy and I cried anbd grieved at the time, but she was born perfectly normal. As she's grown though she had shown to have a developmental delay and I wonder if it's related to the "possible trisomy diagnosis" during pregnancy....
She is now 5 and has started mainstream kindergarten this year (a year late) and all I can do is wait and see if she's ready for mainstream school next yuear or if she'll fall in to the "reduced IQ category" of children required for the local "specialist school".
From what I understand, your child is very lucky to be alive.... as is mine has her original diagnosis been correct.... I'm glad for you that your child is still here and I hope she continues to be the defiant one that is different to all the others.
Best wishes to you and your child and to your every wish, desire and action.

Jennifer - posted on 02/04/2009

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hi my name is jennifer. i am 25 years old and has a 2 year old down syndrome bot named taylor who has trisomy 21.

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Very inspirational Michelle. I to have a little girl who after 15 surgies has beatent he odds despite everything. Families make a difference in a childs life. Ally's medical condition was not a surprise I knew of her enlarged brain ventricle at 12 weeks. Katie her twin sister was fine. They also suggested that we abort her so that it would give her sister a better chance. My husband and I couldn't even falthom the thought. They love and care for each other deeply. My little girl laughs, has some speech problems despite her trach, but also uses sign language and is working each day on her articulation and clarity. Ally hears well enough in one hear with an aided hearing aide and has her purple glasses. Amazing miracles these two girls are, your and mine. I agree in testing, it certainly can be scary, but it is always good to find out answers of they are out there. Being your own childs advocate and being persisitant is so important. Ally will have ongoing genetic studies as future testing evolves. She tested Neg for Charge but I was told this can happen. We will follow up in May at Boston Childrens. Her current diagnoses is Bilateral Hemifacial Microsomia. She has a g tube, shunt in her head, and trach to help her breathe. the list goes on. She plays princesses and loves books. I am a full time nurse at home, but I also get the chance to work per diem as an Obstetrical Nurse. Thank God for friends and family. My girls mean the world to me. Take care and I too hope I can help others with questions and concerns. The answers may not always be clear or readliy available, but don't be afraid to ask questions.

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