We are doing IVF and have been going through fertility treatment for about two years now we just received our PGT testing results back on February 29. The girl embryo has high level trisomy 13. The little boy embryo has low level trisomy 17 at believe. We are going to speak with the genetic counselor on March 8 about what to do to move forward or if we should move on to our egg donors that are fertilized with my husband. It definitely is a crushing heartbreaking result. We want to make the best decision for our family and the potential baby.
BLESSINGS TO BOTH FAMILYS❤ ALL CHILDREN ARE A GIFT FROM GOD. 🥰 THEY ARE SUCH PRECIOUS CHILDREN😊 WITH AMAZING PARENTS THAT LOVE THEIR BEAUTIFUL CHILDREN❤ PRAYERS TO BOTH FAMILY. LOVE CONNIE SUE FROM KANSAS🙏👩🏻🦳🎄❤️🧑🎄🤶👍
Trisomies are incompatible with life because medical professionals refuse to help them be compatible. Yes there are instances where a child can’t live thru the many complications due to this diagnosis but if parents, doctors & insurance companies are willing to take a chance there are kids who can live beyond infancy & actually thrive. Parents love their babies no matter what & the medical community needs to understand & step up. Kudos to both of these families & blessings to their little ones!!
The ugly truth is that these children require life-long, intensive medical care that surely affects their quality of life. Not to mention the parents life-long duties to care and pay for their Trisomy child who will never be able to care for themself. Insurance companies operate as a business who want to make money; they aren't compassionate charities. They want to invest in people who have health that is compatible with life. So much to think about.....
Elijah Hart is sooo precious, he adores both of is Parents... Y'all are doing something right!! Harley just adores her Parents as well. Many blessings to both families...
Where are they “thriving” exactly in this clip? The girl is 5 and just chucks her head back whilst chewing on what looking like a toothbrush or chewy type product. The other kid is 4 and can only pull his dads beard the same way an infant would, just whining and pawing at their faces. This is the best it gets for these kids, that’s not thriving to me. Just eternal babies for the rest of their lives.
@@nat22228having worked as a medical professional and having had exposure to trisomy 13 and 18 neonates and young children, I agree with you regarding full trisomies. Mosaic trisomies can demonstrate minimal cardiac and neurological anomalies, and some can actually thrive, according to societies standards. Most full trisomy 13s are functionally non-sentient. It’s the parents choice, obviously, and there are vast differences in what one considers “thriving,” happy, acceptable. I have problem with some, not this one, videos that families, who include children with full trisomy 13 and 18, posting videos of how wonderful, joyous, “blessed” they are to have a kid with trisomy, and that tending to a trisomy child is not a big deal. It is. It’s a full-time job to care for one. I am concerned that.l social media presentation may lead some to make the wrong decision, about termination, based upon some random subjective, inaccurate portrayal of the harsh realities. I saw one mother who, repeatedly, says, “(Child’s name) is rocking life, trisomy style.” YIKES.
The vast majority of these babies live for a few years even with full care. They spend a lot of time in the hospital. Mentally they don’t develop past the infant stage. Some people are ok with that & some aren’t. Most people seem to choose comfort care only which is really just carrying them to term & keeping them “comfortable” till they pass away naturally. No interventions. Personally I don’t see the difference between compassionate early induction & comfort care. Without major interventions most die within a few months at best. It’s a hard diagnosis & parents should have the choice of what to do.
It’s crazy they said don’t google it because who the hell would not ? My baby died from trisomy 21 before he was born and the doctor really didn’t offer any support at all.
What passes for a "Doctor" anymore is really lacking. They seen unconcerned for the patient, only in it for the money. The Hippocratic Oath is pointless. I am sorry for your loss!
I’m so sorry about the loss of your baby. It infuriates me beyond all belief that you also had an arrogant doctor with zero empathy. No mama should have to deal with an uncaring doctor on top of the agony of losing her baby. I hope/pray that doctor loses their license or anything else may happen to keep them from putting more parents through additional trauma they don’t deserve. Your daughter is absolutely gorgeous and I hope you are doing well. God’s blessings upon you and your family. Sending hugs and prayers your way 🙏🤣
@cub35guy I just hope the parents of these two beautiful children never read your comment. It’s obvious these parents adore and love their children, who are you to judge them? Calling them selfish , honestly I just despair sometimes. As a former paediatric nurse I also despair about the lack of information and care given to the parents when they got the diagnosis and during their birth. Sending my best wishes to both families ❤🇬🇧
Understand your point. Looking only at the child, they will lead a life fraught with disabilities. Their lives will be filled with often painful surgeries and procedures to keep them alive. They will cognitively be barely able to speak and convey their own feelings, wants, and needs. This isn't life; it's existing. Before modern medicine had the ability to extend these lives, nature took these children back to their creator in death. The parents love this baby and think they are doing the best for them with the belief that ANY life is worth living, but is it?
Chewing on a piece of plastic without any clue as to what is going on and pulling at peoples faces is the best it’s going to get for these kids. Permanent infants no matter what age they may reach. No quality of life for anyone.
My doctors lied to me. They withheld pertinent information that could've helped me make better decisions on how my child was treated in the healthcare environment.
These two sets of parents are amazing. God bless you and your children.
My nephew has this. Thanks for being a positive voice in a very negative world.
We are doing IVF and have been going through fertility treatment for about two years now we just received our PGT testing results back on February 29. The girl embryo has high level trisomy 13. The little boy embryo has low level trisomy 17 at believe. We are going to speak with the genetic counselor on March 8 about what to do to move forward or if we should move on to our egg donors that are fertilized with my husband. It definitely is a crushing heartbreaking result. We want to make the best decision for our family and the potential baby.
Hope everything worked out. Prayers
Bless both sets of parents and bless the 2 angels. ❤
BLESSINGS TO BOTH FAMILYS❤ ALL CHILDREN ARE A GIFT FROM GOD. 🥰 THEY ARE SUCH PRECIOUS CHILDREN😊 WITH AMAZING PARENTS THAT LOVE THEIR BEAUTIFUL CHILDREN❤ PRAYERS TO BOTH FAMILY. LOVE CONNIE SUE FROM KANSAS🙏👩🏻🦳🎄❤️🧑🎄🤶👍
Trisomies are incompatible with life because medical professionals refuse to help them be compatible. Yes there are instances where a child can’t live thru the many complications due to this diagnosis but if parents, doctors & insurance companies are willing to take a chance there are kids who can live beyond infancy & actually thrive. Parents love their babies no matter what & the medical community needs to understand & step up. Kudos to both of these families & blessings to their little ones!!
Preserve life. #prolife
This is an over generalization
Not every body has the resources that a baby with that condition needs. Just think about a single mother .
The ugly truth is that these children require life-long, intensive medical care that surely affects their quality of life. Not to mention the parents life-long duties to care and pay for their Trisomy child who will never be able to care for themself. Insurance companies operate as a business who want to make money; they aren't compassionate charities. They want to invest in people who have health that is compatible with life. So much to think about.....
I have a daughter that’s in your 30s that has the trisomy, so yes they can survive
GOD Bless both families!👍🏾
Elijah Hart is sooo precious, he adores both of is Parents... Y'all are doing something right!! Harley just adores her Parents as well. Many blessings to both families...
This is the first I knew that trisomy 18 was survivable. So good to see these beautiful children thriving
And when the parents pass? What happens with their "children" ?
Where are they “thriving” exactly in this clip? The girl is 5 and just chucks her head back whilst chewing on what looking like a toothbrush or chewy type product. The other kid is 4 and can only pull his dads beard the same way an infant would, just whining and pawing at their faces. This is the best it gets for these kids, that’s not thriving to me. Just eternal babies for the rest of their lives.
@@nat22228having worked as a medical professional and having had exposure to trisomy 13 and 18 neonates and young children, I agree with you regarding full trisomies.
Mosaic trisomies can demonstrate minimal cardiac and neurological anomalies, and some can actually thrive, according to societies standards.
Most full trisomy 13s are functionally non-sentient.
It’s the parents choice, obviously, and there are vast differences in what one considers “thriving,” happy, acceptable.
I have problem with some, not this one, videos that families, who include children with full trisomy 13 and 18, posting videos of how wonderful, joyous, “blessed” they are to have a kid with trisomy, and that tending to a trisomy child is not a big deal.
It is. It’s a full-time job to care for one.
I am concerned that.l social media presentation may lead some to make the wrong decision, about termination, based upon some random subjective, inaccurate portrayal of the harsh realities.
I saw one mother who, repeatedly, says,
“(Child’s name) is rocking life, trisomy style.”
YIKES.
This is brilliant. I hope those that need this message hear it.
Extremely informative! Great job Nehemiah, Ebone and JB!😍
Wishing you all the Best 🙏🏽
Greetings, blessings and covering over you all. I lost my son to this syndrome. Thank you for being the voice 🙏🙏
God Bless you all
Thanks for sharing your stories this is so important!
The vast majority of these babies live for a few years even with full care. They spend a lot of time in the hospital. Mentally they don’t develop past the infant stage. Some people are ok with that & some aren’t. Most people seem to choose comfort care only which is really just carrying them to term & keeping them “comfortable” till they pass away naturally. No interventions. Personally I don’t see the difference between compassionate early induction & comfort care. Without major interventions most die within a few months at best. It’s a hard diagnosis & parents should have the choice of what to do.
It’s crazy they said don’t google it because who the hell would not ? My baby died from trisomy 21 before he was born and the doctor really didn’t offer any support at all.
What passes for a "Doctor" anymore is really lacking. They seen unconcerned for the patient, only in it for the money. The Hippocratic Oath is pointless.
I am sorry for your loss!
I’m so sorry about the loss of your baby. It infuriates me beyond all belief that you also had an arrogant doctor with zero empathy. No mama should have to deal with an uncaring doctor on top of the agony of losing her baby. I hope/pray that doctor loses their license or anything else may happen to keep them from putting more parents through additional trauma they don’t deserve. Your daughter is absolutely gorgeous and I hope you are doing well. God’s blessings upon you and your family. Sending hugs and prayers your way 🙏🤣
Cute teenie tiny babies, children of our Lord Jesus.
Precious children ❤🙏
A disabled child is entitled to medical care as well, Doctors...
Good and informative but what’s with the wierd music??
Great parents
Elijah is so cheeky.
❤❤❤❤
They may be alive but what is the quality of life? This will seem rude, but these parents are selfish.
I guess I wonder who gets to determine what is a sufficient quality of life to be allowed to live.
No quality of life... To say it honestly.
@cub35guy I just hope the parents of these two beautiful children never read your comment. It’s obvious these parents adore and love their children, who are you to judge them? Calling them selfish , honestly I just despair sometimes. As a former paediatric nurse I also despair about the lack of information and care given to the parents when they got the diagnosis and during their birth. Sending my best wishes to both families ❤🇬🇧
Understand your point. Looking only at the child, they will lead a life fraught with disabilities. Their lives will be filled with often painful surgeries and procedures to keep them alive. They will cognitively be barely able to speak and convey their own feelings, wants, and needs. This isn't life; it's existing. Before modern medicine had the ability to extend these lives, nature took these children back to their creator in death. The parents love this baby and think they are doing the best for them with the belief that ANY life is worth living, but is it?
Chewing on a piece of plastic without any clue as to what is going on and pulling at peoples faces is the best it’s going to get for these kids. Permanent infants no matter what age they may reach. No quality of life for anyone.
Do they have the full or partial trisomy 18??
Both have full trisomy 18
I think the doctors have to be more positive about this kind of stuff
👍🤲👍🤲
Evelyn Y Rucks
My doctors lied to me. They withheld pertinent information that could've helped me make better decisions on how my child was treated in the healthcare environment.
What information can you tell more?