My nephew has this and unfortunately the doctors and specialist missed it the whole pregnancy, I'm flying to Germany with my mom to help nolan transfer to our Lord pray for us..
same with us.. docs all missed it during the pregnancy. We had absolutely no idea he was anything but normal until we had to suddenly do an emergency csection. Was pretty terrifying.. hope all works out with your nephew <3
@@SamuelT13 that's what happened to my sister the plecenta wasn't giving anything to the baby an his intestines didn't reach his colon so they had a c section too , it's ok cause babies have no sin so they go straightt to heaven an get new bodies it humbled my sister an is bringing her to God
@@SamuelT13 I've been doing a lot of research on it in medical school an I believe what happened is the egg didnt split right. Do to the fact they didn't have him naturally they made him in a Peachtree dish unfortunately that's what happens when you try to play God it's not allowed
My son has Trisomy 21 (Downs Syndrome) and he is 34 years old. I remember when he was born by C-section and I was unable to see him until two days later. He wasn't brought to my room so I had to heal enough to go to the NICU. I didn't recognize him and I began to cry thinking they had given me the wrong baby. He had changed because of jaundice and I just wasn't ready for what I saw. The next day the doctor came to my room and sat beside my bed and asked if I wanted to put him in an institution. I still cry when I tell this story. After crying for a couple of minutes, I told him no and that I would be taking him home. You see it didn't matter if he had no legs, arms, and an eye in the middle of his head like a cyclops, he is mine. I consider him a Blessing no matter what and there have been many obstacles. We just maneuver through them and keep going. I don't even know what I would do without him. They are all Blessings no matter what.
Hi I stumbled on ur video last night after my embryo daughter was diagnosed with t13 . May I ask what ur opinion,cos we thinking to set her free ,forced labor 😔. Also how ur son doing now ?
sorry just to be clear.. are you asking me what I recommend regarding having an abortion? I dont mind this question.. I just want to confirm exactly what you're asking me. My son is doing well thank you. He's healthy and doesnt have any major problems at the moment :)
@@hillsongbest3818 I can't really say that I recommend it or I dont recommend it. However, I can tell you that... if your child survives past the first few weeks/months.. you and your partner will need to give the child 24-hour care. Day and night, they will need your attention. The child will also likely need multiple surgeries to assist with their breathing/eating (cleft palate = problems eating and so needs feeding tube), as well as to fix problems with their heart (you've mentioned VSD - my son also had that - and had surgery to fix it). My situation is that my wife and I both work from home, so it is OK for us to give the child 24 hour care.. however, for some families this is extremely difficult. So i think you need to assess whether you and your partner are in a position where you will be able to give 24 hour care to this child.. basically the same care required for a BABY, but for many years. However, I would also recommend talking about all of this with your doctors. I can't give medical advice. I also just want to say that I'm actually doing a video right now about this topic - describing the life of a trisomy child. I will try to finish it soon for you. Take care and please ask any other questions you have <3
Why do you assume we knew he had this condition before he was born? We found out about his condition the day he was born. Thanks for calling us cruel though. Nice of you...
Thank you for your videos. My baby girl had T13, born 31 May 2024, lived for 35 days. Still grieving, your videos are helping me in ways you wont understand. I pray that God will give you financial, emotional and physical strength to look after your baby boy. Thank you for your vulnerability and honesty, and for sharing your baby boy with us.
What a beautiful video and explains perfectly how I feel about our loved ones deemed unable to live a good quality of life. Your baby boy looks very happy to be here and very comfortable with everything he has. Hope you are all doing well ❤
thank you very much for your comment. I'm quite sure he absolutely loves his little life. We're very lucky to still have him after all these years we're all doing well, thank you :)
Greetings, Divya here with NTD Television. We are one of the world's fastest-growing media companies with over 100 million fans and 1 billion monthly video views across all of our social properties. Our motto is truth, hope, and humanity. We love your videos and our editors would like to showcase them by uploading them on some of our social media pages and websites so that our fans can see them. Of course, we are happy to credit your channel clearly to make sure people know how to find you and your videos. You will still hold the exclusive rights to the video. Can we have your permission to do that? Kind regards, Divya
i read your comments but they were deleted. in 99% of cases Trisomy is a random mutation. Very very rarely it is passed on genetically by a mutation present in both parents. But this is rare. The chances of having a trisomy child are increased primarily with maternal age, so if the mother is over 35 or so, the risk will increase.
@@SamuelT13 thank you very much Samuel. I need help, I have 24 weeks pregnancy with trisomy 13. So can you give me you're contact as soon as posible Please.
My son was born in 1983 with a more severe form of Trisomy 13. When I first saw him (he was taken to another hospital at birth) my husband & I put a Do Not Resuscitate order on him. He died at 12 days old. We couldn't stand the thought of him suffering.
My friend had her baby tested. She was positive for trisometry . She decided to have an abortion. I fully supported her. The child wouldn’t have had a real life. Just being isn’t living. The other problem was that she couldn’t give her the care she needed. People have to work and the kind of care such a child needs is expensive. Also the mental toll it has on a person must be very high. It’s a personal choice. If people feel the need to have this child it’s up to them. After all it is their baby.
"The other problem was that she couldn’t give her the care she needed. People have to work and the kind of care such a child needs is expensive. Also the mental toll it has on a person must be very high. " all of this is VERY true. Having a trisomy child is not for everyone.. i am in a very unique position in which I'm very capable of handling it (both myself and wife work from home/self employed). I honestly cannot imagine doing it in any other circumstances. and yes, mental toll is extremely high. In fact.. everything you said in your comment I am fully supportive of.
thanks for your support. Its fine - i'm used to it! Just gives me a chance to shine light on ignorance and maybe reduce some of it family is doing great thank u! ups n downs, but we're a very happy close little unit.
Who says love at first sight happens only on the pages of the greats and the silver screens of Hollywood?! I just felt it explode within ne the moment my eyes met this gentle, cooing, sweet, baby . What a darling! My prayers will find this family within thej.
You said you didn’t know until birth, did you consider genetic screening? I was told that one of my pregnancies had a risk factor for trisomy 18 and had further testing done and she was fine. But I don’t think I would of continued the pregnancy if she hadn’t been.
we didnt consider it because we weren't aware of the risks. We did however do genetic screening on our next child (my daughter) who turned out to be totally healthy. we wouldnt have aborted anyway if our son was positive for trisomy. We'd have just held out hope that he was mosaic / mild or that the test was wrong.
You make a comment in this video about keeping a child alive for the parents and not the child. That’s really a double edged sword I think. I believe you are keeping him alive for yourself because he has no comprehension about what’s happening around him. He may smile at a tickle or a toy you show him, but I don’t believe he has the ability to understand his place in the world. The reason I say it’s a double edged sword is that I don’t see another option for you but to do the best you can for him. Once he was in this world it was your responsibility to give him as much life as you could. I feel your heartache and know you would want him to have a life but you know he never will. I have lost a child so I understand the grief that waits for you.
"Once he was in this world it was your responsibility to give him as much life as you could. " yep - thats exactly right. Once he was born, we really had no choice but to try to help him live. Anything else would have felt like abandoning him and actively contributing to his ... end. which we honestly never even considered.
its like down syndrome(trisomy 21) but in the case of patau syndrome (trisomy 13), and edwards (trisomy 18), its much more severe basically its a genetic condition where the baby is born with 3 copies of the 13th chromosome (rather than 2 copies), which causes a tonne of problems with organs, brain development, etc
Watching this through tears, you have two beautiful children, very different but equally as beautiful as each other, you are truly blessed, and they are too having you and your wife as their parents, Thankyou for sharing your lives with us ❤
The fact the child has a condition that is normally incompatible with life and seeing he's still thriving does defeat the odds. May I ask, does he have full Trisomy 13 or the Mosaic form?
@@SamuelT13 tell him I told his story to 23 cats, and they all send him love. there's no life that should not be. everyone is very precious and there is no set amount of time, to say, it was your whole life, however long it is. you will love him his whole life. that is a promise. ❤
Hes an absolute blessing in which his heart feels! Hes beautiful in every step of his way! Thank you for sharing your stories! You have a beautiful family! Many blessings being sent your way!!!❤❤❤❤❤❤❤
My daughter died when she was 33 after a very sudden and quick illness. As anyone who has ever lost a child will tell you, it is the worst thing that can happen to you. You are being forced to lose your child every day for years. Horrible. I’m very sorry for your family.
