Living with Trisomy 18 (An Extra 18th Chromosome)
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- čas přidán 10. 01. 2024
- Heidi was born with an extra 18th chromosome, a condition known as Trisomy 18. After she was diagnosed in-utero, her parents were told that she "wouldn't be very human-like". They decided to just love Heidi unconditionally. Heidi is now 6 years old and her family is proud of everything she does, like using sign language to communicate.
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"A person's life doesn't have value based on what they can do or what they can accomplish, a person's life has value based on the fact that they are. They're here. So her life has value."
This was the most beautiful thing I have ever heard, thank you Heidi's grandma for sharing such a profound sentiment.
I felt the same on this answer....and I think this shows the heart of this great grandma formidable....
I was about to leave a comment about those same exact words, then I saw your comment and instead I’ll second precisely what you said about them.
This whole family has such a loving and gratuitous attitude towards life. It makes my heart so happy.
Amen ❤
No es fácil...un niño con síndrome de Dawn ya es un reto y en este caso es mucho más la dependencia de la criatura... Dios nos manda en esta vida muchas pruebas ..a todos
Hi. We, too, had an incredible daughter that had trisomy 18. Despite all of the medical challenges, we got got to have her for 36 years, 5 mos, and 32 days. Her effervescent spirit and smile would fill a room. She loved music of all kinds. She was mostly nonverbal but could convey exactly what she thought with facial expression. She taught us and those around us more than we could ever teach her. She received her heavenly wings February 22, 2022. We will always be missed.
I'm sure you treasure those years so much. Thanks for sharing your story. May your daughter rest in peace ❤
Your daughter sounds like such a blessing. I’ve been a support staff for individuals with a variety of disability for 71/2 years now and I’ve leaned more from them than I could ever possibly teach this world. ❤️ blessings to you, your family and your sweet daughter in heaven. I actually just turned 36 years old last month.
Wouldn’t that be 36 years, 6 months and a day? A month can only go up to 31 months 🙄
@@AEWFOd1993 I put the wrong date it was Feb 20, 2022 she was 36 yrs 5 mos and 22 days. Glad people like to nit pick. We lived it.
A month can only go up to 31 months? youre going to nit pick and say something like that? weed is bad for you.
My daughter River passed away in my womb in 2015 and the autopsy revealed she had trisomy 18. It makes my heart so happy to see Heidi thriving. She is a beautiful light.
I'm so sorry 😓 River is a beautiful name❤
They didn’t see that in ultrasound?
@@edgarallanpoestheblackcat6613 when babies are that tiny, it might be hard to see some of the physical features
Trisomy 18 ( Edward’s Syndrome) is a significant cause of spontaneous miscarriage.
Her whole existence all she knew was the safety, comfort, and love of her mother's womb. ❤❤
I didn't know kids with Trisomy 18 could flourish like this. Heidi is adorable and you can really see her family's love and dedication reflected in her.
Every child is different.
I only knew that kiddos with trisomy 18 mosaicism usually live longer than those with full t18. Sweet little girl, what a blessing it is that she’s around in this world
Yeah this was my thought - wondering if Heidi is mosaic trisomy. My little baby girl had full/severe T18 and didn't have any chance to live like this no matter how hard I wished it was so. :( What a beautiful family@@Dogy0909
Right? They make it like these kids can't or won't live. I understand that may be true in a ot of cases but not all. Imagine how many other conditions they would have suggested termination for. I have 2 autistic sons and I often wonder that
Full t18 is pretty fatal. But partial it will be profound disability, but they live longer. It really depends on what organs are affected and to what degree.
her grandma’s story about knowing heidi was born alive by seeing her dad pumping his fists behind the isolette was unexpectedly impactful for me. every moment of heidi’s life has truly been celebrated to the fullest!
it’s a beautiful thing to find a family this full of love and joy, especially when they’ve done it on purpose. i wish them all the best :]
Yeah, that just got me crying 😭❤
People might be interested in checking out Brandon Bosma, a young adult with Trisomy 18. Brandon is an outspoken public advocate for improvements on how the medical system handles Trisomy patients.
Thank you for sharing. I watched Brandon on Ted Talks. Such an awesome communicator!
@@CancionNueva70 He really is! Brandon is not only an extraordinary young man who has a lot to be proud of, but he's also a fantastically in-your-face reminder for medical personnel to drop the too common attitude of "incompatible with life so let's not bother treating him!"
@@margiecasey9428 I agree. I understand when a prognosis is really bad they have to do something to prepare the parents for the worst, even using difficult language such as a condition being "not compatible with life" if the outcome has a high likelihood - though I would think they should be reasonable enough to use such absolute language when they know that when it comes to life there aren't such absolutes. However, I find it highly unconscionable when they use dehumanizing language, saying that the child will be 'less than human' as these parents were told.
@@John_Fisher What it comes down to always -- every time -- that is somebody's child! I believe most doctors are sensitive to the situations of the patients and their families.
He has mosaic trisomy 18. That's why he's still alive and verbal.
I LOVE how proud and excited Heidi’s mother looks when she looks at her children. Especially how proud she is of every single thing Heidi does. Heidi’s hard work doesn’t go unnoticed. ❤
When the grandmother said a persons value is not based on what they can do but by the fact that they simply are was one of the most beautiful things to be reminded of. I personally needed to hear that myself.
💜🫂
I lost my daughter before she was born and was told by our doctor she would have had Trisomy 18. I am crying watching this and send you prayers and love, to you and your family, Heidi
May God bless you and grant you peace and comfort. May you hold your daughter in heaven one day.
I’m very sorry for your loss. ❤️
God bless you with comfort until you meet again 🙏🏻💜🫂
Hugs 🌈 ❤
Any loss must be tragic. But as my husband says (he is a physician), nature has built-in safeguards against the propagation of that which is incompatible with life. Unfortunately (and I DO believe it to be unfortunate), science has advanced to the point that we now override that which would have been better left to nature.
I had a miscarriage (though three healthy children) and never mourned it for one minute, knowing that the birth of a severely impaired child would have been so much worse!
My late sister had Trisomy 18, the doctors suggested termination but my mother didn't do it. This video brought me to tears. I miss my sister so much and to see a glimpes of what my sister might have been like if she had survived is so special to me. May God bless the family of Heidi and her. It's not easy rasing a kiddo with special need but it's tuly the honnor of a lifetime. From the bottom of my heart thank you for making this video!
I've had two children with Trisomy 18. A daughter who was stillborn at full term and a son born a year later who lived until he was 15 months old.
They missed it at our daughters post mortem and it wasn't until our son stopped breathing at 5 months old when he ended up in Great Ormond Street Hospital London where the genetists looked at him and did blood tests and we were told he had Trisomy18/Edwards Syndrome and that it was incompatible with life and to expect him to die at any time.
They tested myself and my husband and found that he was a carrier of this condition although he himself wasn't affected by it but that any children we had together would more than likely have it as we had had two miscarriages before our daughter was stillborn.
Our son was such a beautiful little boy who brought us so much joy during his short life. He was loved by everyone and he loved to go swimming where he used to sing to himself when he was in the warm water. He also loved music and used to smile a lot. He would be 25 now had he lived.
Heidi and Willa are truly beautiful children. Enjoy everyday with them. xx
I'm sorry for the losses you've suffered, but I love your positivity. Blessings 💜
Thank you, JMK, for sharing your story. You have warmed my heart today. If you hadn't made the choice to post it, I would never have experienced these moments of joy. Thank you for being such a great person.
I had a cousin with Trisomy 18, she unfortunately passed away just before her second birthday. It was heartbreaking.
@@foolishlyfoolhardy6004 - No they didn't really explain how it works to us, they just said my husband was a carrier and that any children we made together would have a high chance of having it. This was from genetists at G.O.S.H hospital one of the best children's hospitals on the world.
My condolences. I have lost a child as well. I’m so glad you have beautiful memories with your son.
This family has the most calm, sweet presence (all the way from grandma down to little Willa!) and I’m just smitten with them! Their energy and personalities seem so perfectly suited to Heidi’s communication style, too.
This is my family (Heidi’s dad is my brother) and you are absolutely right! They are the most kind hearted, caring, chill, and honestly HILARIOUS people, all of them. God couldn’t have chosen a better family for Heidi 🤍
@@soccergirldiva Willa is your twin.
Doctors really are a piece of work sometimes. The more I watch this channel, the more I remind myself to be absolutely empowered and alert when talking to them.
AGREED
She’s proof that people with Trisomy 18 can have a great life with lots of love and joy. Shame on the doctors who said she wouldn’t be “human”. They’re inhuman for not having compassion for all people regardless of genetic mutations. I hope she has a long amazing life with her family 💜
As a doctor’s wife, I strongly suspect the treating physicians didn’t exactly put it that way! I’m sure they tried to portray a condition that is so far from the norm that a parent wishing to terminate should be supported and not feel guilty about a reasonable decision.
Sometimes parents hear what they think or fear but that doesn’t make it true or likely. I know of no professional who would have said that.
@@lynnparrish1335 just because you know of no professional that would have said so doesn't mean it didn't happen, regardless and irrelvant of being a doctor's wife.
Some doctors have said that they were taught that both trisomy 13 and trisomy 18 are incomparable with life.
I know how it feels to be a Grandmother of a little girl with Trisomy 18! Our precious Nori was so loved! We were lucky enough to have her to the age of 6! My Daughter and Son N Law were like yours! So caring and loving! I pray you have her for many more years! Heidi is so precious!❤
I love how Heidi is so still and so calm when sitting on her grandma's lap. You can tell she is totally comfortable and feeling the good and loving vibes with her
Our lil Beauty, Carah Grace was diagnosed at birth with mosiac T18. She was 15 days old when she passed. We were blindsided by anything being wrong at the time. The Drs information was overwhelming as to how she would not be compatible with life. Although, Carah Grace’s life was but a few days she made such a huge impact on us. She was a fighter. She taught us so much on how to be strong in the hardest of times. She would be 22 years old this year. I can truly say those 15 days were some of the greatest moments of our lives. As hard as they were, they were filled with complete love. Her legacy lives on through us as her parents and her little brother.
This adorable family is great reminder of why children's books are so important! Representation of disable people teaches children that people are different and provides bonding between reader and listener
So truee! I'm currently writing (and illustrating as there will be more illustrations than text) a book for children (some main characters are disabled) and seeing kiddies so happy to read/hear books makes me so excited to work on it 🙈💗
Willa’s little complements about her sister were absolutely adorable. These sisters melted my heart ❤️.
I love to see people with chromosome disorders as I have P-9 Deletion which is where I’m missing one. So much love ❤
My daughter has to different misspellings in her dna that have never been seen before. My daughter is the only person that has these misspellings so far. I wish there were more support group for these Gentics disorders
Im starting to see a correlation that a deletion isnt always a big deal but having an extra one is which is so fascinating to me because id think it be the other way around
@@MilaperadottiI would love to see you and your daughter on sbsk
@@Milaperadottii’ve actually thought about this too. you would think that too little DNA would be worse than too much. i guess the body just doesn’t know what to do with all the extra “information”.
@@Milaperadottiyou should reach out to Chris, he’s had a few kids on the show who’ve been diagnosed with genetic disorders so rare they’re the only known cases
my daughter has severe autism, age 5 , non verbal, but i know she wants (and gives) love and affection which is priceless , i am an older dad age 57. wish i was younger, but do my best and i get rewarded with a hug every so often, you have to be very patient and tolerant
Autistic person here... Please use the term 'high support needs' instead of 'severe'! Thank you. Hugs to you and your daughter
@@Ultrasilvamwhy do we have to sugarcoat things? If her case is severe it’s severe, there’s nothing insulting about that. I’m all for using respectful language but this seems like a bit much.
Agree ...some Asperger autists thrive on ' correcting' others ...my ex boyfriend used to do that to waitresses, he ' found ' mistakes' on most menus . It was so embarassing and unnecessary. I hardly could stop him . Socially handicapped
@@batacumbabecause one autistic person can't be "more" or "less" autistic than another...? autism is a *spectrum* , but it isn't a straight line
She's different, not less. She is wonderful all the time ♾️🫂💙🦋🤟🏿
"A person has value because they are here." Thank you so much! I seriously needed to hear this! 🙏 ❤
Aww, Willa's little "I do" was so adorable
I worked at a daycare and we had a few kids with trisomy 13. They amazed us all the time with their accomplishments. Loved working with them ❤️
My cousin Sara has this condition! i actually only learned the name last year at 23 because it was never something we specifically discussed besides being told as kids that she had already beat so many odds they had nothing to really go off of. She's just always been Sara. She has continued to beat those odds with relatively solid health to my knowledge (no major hospital visits or anything), and she definitely is at least in her mid/late 30's now as the oldest cousin - complete with a nice head of gray hair haha. We still are waiting for her to get her license and get out the parent's house though! (our famliy jokes about everything, she doesn't get any passes) She loves her toys and her dad more than anyone else, and she smiles and gets very excited when he comes home. By far though, she has an impeccable sense of comedic timing. She likes to screech at the most inappropriate times, especially funerals LOL. You can't convince me it isn't somewhat intentional.
She sounds hilarious and amazing ❤
she sounds like a blast!
In my 6th month of pregnancy, I received a blood test which indicated my son has a high probability of Trisomy 18. It took another week before I had an amnio, and we were blessed to learn that his chromosomes were normal. During that week, my husband and I had to discuss our options and it was heartbreaking. So much love and respect to this beautiful family, what a beautiful miracle 💖
I feel like we get even “more” out of Heidi’s “more” sign. We got the most “more”.
Such a loving family.
And Willa, what a great sister you are to Heidi!
🩷💜🩵
A family member of mine had a stillborn child with this condition. Thanks for shedding light on it!
It makes my heart happy that she is growing and still with them. My cousin's baby also had Trisomy 18 and she passed away at about a week old.
Hugs ❤🌈
I love how Chris gets down with the child and just have fun. We need more Chris and his beautiful wife.
I love how when you ask, "What do you love about your sister?" Heidi had a LOT to say. She loves her sister! ❤❤❤ And she seemed to like you too!
Yeah, I noticed that, too. I think Chris was directing the question to Willa, but Heidi clearly wanted to answer it. ❤
You all are such awesome people. Kind, smart, interesting. Thank you for introducing us to Heidi.
Wouldn't be very human like???? What does that mean?? How disgusting. I hope it was made clear to the person who said that, that they are less of a human than Heidi will ever be.
I agree 😢
Hey now, insensitive ableist people are humans, too.
Yeah. That doesn’t sound like a compassionate thing to say at all. Even if you want to give the reality of what she’s facing, that’s an awful thing to say.
It's beautiful to see how this young family has learned to enjoy and grow with Heidi in it even though they never could have hoped for or planned what it would be like. Regarding the comments from the doctors: I understand when a prognosis is really bad they have to do something to prepare the parents for the worst, even using difficult language such as a condition being "not compatible with life" if the outcome has a high likelihood. However, I find it highly unconscionable when they use dehumanizing language, saying that the child will be 'less than human' as these parents were told.
I agree 😢
Heidi is awesome. I love that this channel’s videos show us how much love parents and grandparents and siblings have for special needs children and adults. So many of them seem to much happier than able bodied people I deal with daily. What a beautiful family!
Heidi is such a sweet girl who is very loved and knows she's loved she is very calm liked how she picked the book she wanted she is doing so well because she is so loved
She looks like her grandma as well. Such a beautiful story
Yeah, I noticed that, too.
Thank you for sharing Heidi with us. I miscarried my trisomy 18 baby boy and was devastated about 20 years ago. Heidi is so precious ❤
Blessings, good health and good luck for Heidi and her family
My sister had trisomy 18 but passed away as an infant. It brings me so much joy to see how beautiful and joyful Heidi is.
I love that when Chis asked a question about sisters Heidi answered in her own way about Willa
Hi there Heidi! I really loved your video, you must be so happy that so many new people got to meet you! I bet your mother and father and grandmother and everyone else you know is super proud of you 🤗
Every child deserves the best chance at life. I’m speaking as a person with my own challenges as I’m physically challenged and was given less than 48 hours to live & now I’m 34 years old. ❤
What a beautiful family... so much love❤
I’m so thankful Heidi was born to a family of people who absolutely adore her.
I am so glad she is with such a loving and understanding family! These parents (and grandma) are superstars!
That girl makes good choices. I love what Mo William’s books for children.
It goes to show parents to get more than one opinion on anything and everything. These Doctors don’t always know what they are talking about.
willa is SO CUTE!!!!!!!! i love that he shows the siblings plenty of attention as well. especially for those kids who are dealing with uncertainty around their sibling’s health or lifespan.
The mother is the sweetest. God bless you
She is a sweetheart. Good parents, God be with them precious Lord.
This is such an amazingly loving, calm and dedicated family and both girls are adorable. I hope they both continue to thrive, develop and laugh as much as possible everyday.
I love to see videos of kids with trisomy 18 thriving in their own way ❤
Much love to this beautiful family❤
Thank you so much for sharing this sweet family’s story. There is so much fear surrounding the trisomy prenatal tests, and it was heartbreaking to hear the things the doctors said to them during pregnancy. I’m in awe of their incredible outlook and approach to bonding with her during pregnancy to celebrating her 6 month birthday. Honestly everyone could learn something from this beautiful family ❤
I feel privileged to learn about Heidi! She seems like a cool little kid. ❤
Incredible to see a child with trisomy 18 so well loved and cared of. So sorry to hear that people had horrible comments, it must have been incredibly difficult to hear those statistics too for the parents. ❤️ wishing you all the best
What a beautiful loving family!!!❤
She is adorable lil girl. My friend just had a baby with trisomy 18. Her was born with one kidney and has other medical problems. He isn't a month old yet. But he is a cutie pie 😍 And God bless your baby girl 😙
Nice editing kept the important story going.
Although they usually start the videos with close family and introduce any extended family later, what the grandmother said really set the tone of the video well. I think placing her part of the interview at the beginning was a particularly good call.
I guess you Chris are one of the best person I've ever encountered. so much esteem for you and your work dude
What a gorgeous family that is so full of light! The names "Heidi" and "Willa" are so beautiful as well. Thank you for sharing!
What a lovely grandmother!
Heidi and her family are all radiating with love! Thank you.
The younger sister is a blessing to her older sister. That bond will be EVERYTHING for those two moving forward.
What a loving family...a blessing for everyone. Many doctors believe they have all the answers..when love is the greatest healer of all.
Chris you are the sweetest. Im so glad you do this. These kids need to have ppl heir age know its ok to go up to them. My oldest granddaughter loves these videos. She is 11 yrs old.
Heidi and Willa are wonderful children. It sure shines through, just how special Heidi is. I am so happy she is in a family that can appreciate and understand just how wonderful she is, just as herself. May God be with you all...🙂
My husband and I are currently going through IVF and we just received our PGT testing results this past week extremely heartbreaking 😢 our little girl embryo is high mosaic Trisomy 13. Infertility and IVF is so challenging, but that is probably a silver lining is getting and having the option of PGT testing. 😢
You have a beautiful soul young man. You are living proof that angels do live amongst us. Thank you for being you.🙏❤🙏
What a great personality! I Love the lengthy vocalizations and the head lean toward the books. Brilliant!
I appreciate them talking about the pregnancy and the options they were given. I feel like a lot of ppl avoid that topic.
In the family where I grew up, she would have had an even harder time than how I was treated. Being disabled was considered the fault of the child--even though the child didn't choose to be disabled.
😢😢Hope you feel happier now?..
Terrible!🫂💜🙏🏻
I am so grateful for this family, and all others I get to experience on this channel. I loved how they wanted to celebrate everything with their child no matter what, even if the dr pretty much tried to talk them out of it.
Every human being is special, and should have a chance to experience life
Great interview!
Chris knows how to interact and communicate with kids so well !!!
Great family!
Every member of this family is a beautiful soul…I’m thankful they have one another & pray Heidi has a long, happy & healthy life🙏🏼🕊️
Could you imagine a doctor telling you that your child will be less than human? How could they even get that out of their mouth to tell somebody that.? She sure looks an act human to me. Obviously, they didn't know if they were talking about. Mom and dad made the right choice. Let go and let God.
I love this family's response, though. They treasure Heidi's smiles all the more because they were told she never would.
You all are just as sweet as can be. We need more people like you in this world. God bless.
What a beautiful little girl, and what a terrific family. My hat is off to you all. Much love and peace to you.
I heard all those statistics too it’s so empowering now that my baby girl is 14yrs old starting high school. Wheelchair bound goddess! I love these souls
Best grandma ever.
It is so awesome hearing about people given a chance with life despite any health issue or mutation they may have. God is with you. Thank you for appreciating and investigating the special side of human life.
Such amazing parents, grandma and sister! I wish her a full life full of happiness and love.
You guys are stronger than most people to ever exist
She is so cute and I love how she is so attentive to the conversation and responds to mom with so much excitement. She’s an awesome kid and she has a great mom and dad too
This channel is amazing
I used to know this family when I was younger, and Heidi's parents are truly amazing people!!! God bless them and sweet little Heidi and Willa ❤️🙏🏻
This is the most adorable family I have ever seen.
I don't know anything about such conditions but I do know that this is a beautiful family! Its very hard not to jump ahead and start planning for first boyfriends and first dances, to drive or not to drive at 16, college and weddings.... I find it extraordinary that you two have put that aside and can live for today and what it brings every morning. I heard you mention that you prayed with her before she was born...you and your family will be in my prayers as well.
what a beautiful little blessing and amazing parents. such a sweet family ❤️
They seem like such a magical family. They are the perfect family for sweet Heidi. They are so positive and blessed to have Heidi, and she is blessed to have them. ❤️ they are all such a huge blessing to this world.
Heidi's family is another incredible life story where the power of love makes everything all right. Each member were bursting with love. Such divine wisdom too is spoken about valuing each moment and that each person has intrinsic value which has no limit. The amount of communcation that is non-verbal is incredible. Glad this family never listened to the doctors' dire advice. They chose life and love and have given us all a glimpse what it is like to live as angels of God. All our love and prayers. All our hearts are deeply touched by the affection and beauty of this family--always.
What an absolutely loving and gorgeous family. What a special little girl Heidi is and so blessed to have such a loving family!!!
I used to be an AAC SLP, and it’s so wonderful to see all the different ways Heidi communicates.
A beautiful family with so much love and Joy.
Godspeed to you all! Thank you.
What a beautiful story and that the Lord is not wrong, he is just, they are parents and a very united family and this little princess did have a good choice for her parents, many blessings, a big hug.
Such a wonderful and loving family.
God bless and keep this BEAUTIFUL family
🌞🙏🏻🫂💜⚘️🎶💃🏻
Does anyone know how to do the glasses for people who can't communicate what they can see clearly and what not?
It's nice to see the whole family so happy and positive. Sometimes it's hard to be a sibling of a disabled kid, but the parents seem to care for both equally and the sisters must love each other a lot.❤
Although he also uses a machine with many lenses and asks whether the letters look more or less clear, my eye doctor also prefers to fine tune prescriptions by putting dilating the eyes and looking at how light is focused within the eye. I imagine this second procedure would suffice for anyone who can't go through the first one.