Trisomy 18 Life Expectancy | Will Babies With Edwards Syndrome Suffer?
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- เผยแพร่เมื่อ 10 ก.ค. 2024
- If you are pregnant with a baby with trisomy 18, then you probably have two major questions in your mind:
How long will my baby live? Will my baby suffer?
These two questions inevitably lead you to ask perhaps one of the hardest questions you may ever ask, “Should I continue this pregnancy?”
In our last episode, we talked about how we diagnose trisomy 18. And if you’re interested in trisomy 18, you should probably back up and watch that episode.
In this episode, we’re going to talk about actually carrying a baby with trisomy 18. How do you address all these questions and how do you and your family prepare?
This is a topic I plan to return to because it’s so complex and nuanced. There is just no end to the questions surrounding this important topic. Please leave me a comment below if you have any questions about trisomy 18 that I did not cover.
See you next time!
Tracy
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D I S C L O S U R E
This channel is not meant to give any medical advice but does provide hope, encouragement, education, and resources on your health journey. Please contact your Primary Care doctor for medical support.
Please leave me a comment below if you have any questions about trisomy 18 that I did not cover.
You did not touch upon full-vs-mosaic T18
My grandson with Trisomi 18 is now 14 and is doing great. He's always happy, loves basketball and music and is our joy in life. We've been blessed.
Is he perhaps Mosaic T18?
Trisomy 18 babies cannot usually walk by themselves. The mother was probably given this diagnosis during pregnancy but those tests can be very inaccurate. So your grandson does not have trisomy 18 - the mother just received an inaccurate diagnosis during pregnancy. This is actually quite common since these tests are often wrong. Hope this helps.
@McGhee Bentle He is not Mosaic and definitely has Trisomy 18! He can't talk, has severe apnea, on oxygen and has a Stoma so is incontinent, but he capable of understanding directions.
Thank you for talking about the family's quality of life and having to deal with the trauma of carrying, delivering and then burying a baby.
Dr. Papa, my wife and I have an 18 month old boy. It was believed for several weeks that he had Edward's or Petau syndrome because at his 20 week u/s he was very small. A few well-meaning professionals nudged us to abort because we were up against the 24 week window of time in February 2020. We are Roman Catholics and so it was not an option we could consider. I understand decent people can disagree on this but being open to life it meant we couldn't go that route. I guess I write to you because in hindsight so many things happened which made the situation more complex. Our boy didn't have T18 or T13 markers. In fact size was the only reason this was brought up. No clenched fists. No rocker bottom feet. No issues with his heart. I recall asking why they suspected this and never was an answer given. My wife did an amnio and that finally ruled these and some other issues out. Then came a microarray and nothing there either. It was then suggested he may have Cornelie Delange Syndrome, which is mercifully not life-limiting, but with a host of other issues. Still, that made little sense because he had a head in a normal percentile, just small but proportional arms, legs and thorax. One day before the pandemic hit, and with barely a wink of sleep in two months I googled a general description of his features and learned about Russell-Silver Syndrome. We brought it up and the doctors hadn't heard of it. It was my wife's doctor who asked us to take this one seriously as she had previously been a NICU nurse and had seen it. He was born in early May and in the NICU for nearly four weeks, totally alert, but tiny and mean! I guess I mention this because although I think MFM doctors do a great job - and once they found out we were going to have him be born all but one was great - I wonder if T13 and 18 aren't brought up prematurely. I know of other RSS parents who went through similar issues only to have a child born with an endocrine disorder. Strangely, it was a religious brother working as an NP who had suggested it could be endocrine related and had suggested we ask about it (he had in his younger life worked in a NICU before taking his vows). I know trisomy 13 and 18 are much more prevalent than RSS or perhaps even 21, but is it possible physical markers are not fully recognized before parents are put through this wringer? I have heard stories of u/s techs telling parents a child has it before a doctor says not likely or not at all. I know most T 13 and 18 babies who are carried towards term are stillborn or live short lives. I know resource allocation makes it hard to provide for them. I just hope this Syndrome isn't overly suggested to expecting parents. I know of a family whose twins were supposed to have T 18. Neither did.
You're right, we do tend to focus on trisomies 21, 18, and 13, because these are the most common chromosome abnormalities that result in a live birth. Metabolic and endocrine syndromes are more difficult to diagnose. Pregnancies with fetal growth restriction are complicated to manage, especially when we don't have a diagnosis to explain the poor growth. .d and frightened by the emphasis that was placed on the poor prognosis and every terrible possible outcome. We should take this to heart when we counsel patients and remind them that more often than not, babies do well
Hello Ms Papa, Today I just met a fellow mum, she told me that doctors think her 3rd baby might have T18. She's devastated, since doctors also suggested abortion (they tend to do this here in germany).
I googled and found your channel. Thank you so much for the information you (and also Karen) give. I will suggest your channel!
Hello Ms. Papa. First year med student from Germany with Turner Syndrome here. Would you maybe consider doing a video on sex chromosome aneuploidies, too? These are quite common of course, and I think parents generally get an even less accurate idea of what to expect, than with almost any other genetic conditions... I would highly appreciate it.
Hi I have Turner's Syndrome to and have heard that some providers suggest terminating a Turnet baby without providing parents the full details. I have a very full and happy life.
@@meagancarmichael3892 Nice to meet you :). I know... and it`s hard every single time I think about it. I`d certainly say that I life a full and happy life, too
My baby has trisomy mosaic 8 worried abt next pregnancy.. Had growth restrictions in 7th month pregnancy.. Doctor thought I mis protin diet so baby isn't growing so she added diet I birth a baby and found this..
I m worried my next pregnancy..
Dr, Iam from Kerala. My sister in law is in her last time of 4th mnth of prgnncy. In a blood test (maternal triple screening) detected the baby wth trisomy 18 positive😰😰😰 we are in very sad mam. Please give an advice. Is she need abortion???? 😰😰😰😰😰
My boyfriend is 54 years old with so many of these conditions how do I know for sure ? He has never been diagnosed but he has small head , clinches his hands has deformed feet but he functions with working he works 2 jobs very competed to working . Definitely drinks beer way too much like any person that doesn’t understand what’s wrong with them however he does tell me to treat him like he’s 6 to understand most things . He’s super sweet in nature but it’s obvious there’s an issue and this is the closest I can find to him being diagnosed ? I’m confused as to life expectancy though ? He’s 54 years old and his mom is 90 he is the youngest of 7 children and no others like him at all . Should I look at any other diagnosis with any other names .
I went In for a check up today. I didn't want the genetic test done. The Dr only whips out the ultrasound machine for 2 minutes Automatically says baby brain looks like it has Trisomy 18. Now you should really get it. I felt has she did that too make me take the test. I feel forced now. I'm only 13w4d. The arms and legs looked great on ultrasound. The baby even has a nasal bone.
I'm sorry you're feeling pressured. It all comes down to how much information do you want, and when do you want to have it? Some people want to know as early as possible if there is a chromosome abnormality in their baby, so that they can prepare to care for a baby who may have challenges at birth. Other people don't want testing at all; they don't need to know if there is a problem until later. Either way is fine, just think through the process and make your own decision.
@@DrTracyPapa thank you ad that's something my dr didn't understand. Give us time to process and speak to my partner.Don't slam me with all this information and think it's ok. She calls the next day to say I only found one cysts but get the test. I switched hospitals and did the test without being forced. My new Dr said we will take one step at a time. That's all I want.
@@royaltyfagalar3381 Good decision. MY baby has T18 and will be 7 this month.
@@PearlsJourney1 how will u think abt next pregnancy
They said my baby might have this to my baby was born perfect and normal don’t believe the testing or false assumptions on the ultra sounds have faith in yourself! A lot of these companies and doctors are being sued at an alarming rate.
What about trisomy 7? I had a miscarriage due to that, can this happen again ? What cause trysomy 8 on my baby girl?
Trisomy 7 usually results in an early miscarriage. Trisomies (extra chromosomes) are common to see in miscarried fetuses. The chance for this to happen again is low unless you or your partner have chromosome rearrangements yourselves. This can be tested if you ask your OB provider.
@@DrTracyPapa thank you so much, im currently pregnant again, hoping this baby has no complications 🙏
Best luck dear.. My baby has trisomy mosaic 8 worried abt next pregnancy..
I have Trisomy 18 and idk what to think about it
How old are you?
@@marcohernandez8168 14 years old
How do you feel most days… Do you feel ok?
If you had Trisomy 18, you would not even be able to spell words or talk or read. You do not have trisomy 18.
What most likely happened was that your mother received a diagnosis after a test during pregnancy.
However, these tests are inaccurate many times.
You do not have trisomy 18. Your mother was just given an inaccurate diagnosis.