My Child was Born with Down Syndrome
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- Опубликовано: 13 янв 2024
- Martha opens up about her journey of parenting a child with Down syndrome. In this video, she shares her personal experiences, challenges, and the immense joy that comes with raising her extraordinary son. Whether you're a parent-to-be, a caregiver, or simply curious about the beautiful diversity in our world, this video aims to provide insight, support, and encouragement. Let's break down misconceptions and embrace the beauty that every child brings into our lives.
Down syndrome, also known as trisomy 21, is a genetic disorder caused by the presence of an extra copy of chromosome 21. Typically, each person has two copies of this chromosome, but individuals with Down syndrome have three copies, leading to a total of 47 chromosomes instead of the usual 46.
Martha's Links:
Amorcita : Special needs clothing brand ( crewneck I wore that day and forgot to shoutout )
amorcitaoff...
The lucky few foundation : An amazing organization that has helped me through my darkest times and also allowed my family and I to tell our stories.
theluckyfew...
The lucky few Family : the Avis family. The first family I “met” through social media
theluckyfew...
The lucky few podcast : An amazing podcast that has taught me so much, that has allowed me to feel okay for grieving and overall a great resource for anybody!
theluckyfew...
Below are some families who have also helped me on this journey:
downwiththe...
t21poweroft...
the_martins...
happinessis...
www.tiktok.com/@downwithbeaut...
extraluckyw...
Below is also my TikTok : For anyone who wants to follow along in our journey
www.tiktok.com/@mrobbb2?_t=8i...
If you have a unique story you'd like to share on the podcast, please fill out this form: forms.gle/ZiHgdoK4PLRAddiB9
or send an email to wereallinsanepodcast@gmail.com
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I rode the bus with a lot of special needs kids. They were segregated, for lack of a better word, from the other kids as well. I’ll never forget this kid named Ryan who only communicated by making these vocalizations, but you could always tell the emotion he was trying to convey. I was once having an anxiety attack in the nurses office and he recognized me from the bus and came up to me and exclaimed, saying hi to me like he was checking in, and Im like crying, but he instantly made me feel better. I was really shy in school and no one noticed or talked to me, which was the root of my anxiety attack. After that he always said hi to me in the hallway when he would be walking with his aid. That was in 2017 and i hope he’s doing well :)
Wow, your story gave me goosebumps. So smart and evolved with emotions
Beautiful, that really touched my heart. Reminds me of a kid I knew growing up, Christopher. He was autistic and communicated in vocalisations aswell and he had the kindest soul. My brother and I are also autistic and we always enjoyed when he was around in classes, made everyone smile and always really empathetic to anyone who seemed sad or anything in a similar way to your story.
@@SoulxSpectre that’s so cool
I also was in a similar situation in highschool. I was further away from home and rode the bus home from school with mostly special education students. It was a vast array of different classifications and backgrounds but man. Those kids were always smiling and laughing and telling us jokes. I still think about Joey often. He did something amazing for my anxiety and attitude. I’ll remember many of them always.
🥲🥲
Omg 😭 “DS wasn’t a journey we planned, but we sure do love our tour guide..” I losttttt it. She’s is such a great mom!
me too, i looked over at my sons and just was reminded of my love for them from her love!
Mom of a DS child here. My daughter was born Dec 22nd! I have similar story. My doctor also stated people terminate pregnancies like these. Babies have lots of health problems, etc, etc. I thought of it but couldn’t do that to my baby. Best decision ever. She is 13 now! I know we have a long way to go but I have lots of help. My daughter is funny, vibrant and she doesnt speak much but that’s ok. We love her regardless❤❤❤
You’re amazing! 🥹💖
moms/parents of children with disabilities are so kickass. loved this episode.
I truly believe that this is such an important episode for people to listen to because not only does it help parents of children going through the same thing, it’s also helping people understand the child as well
I physically and audibly GASPED when she said the nurse asked “so when do you want to terminate” that’s absolutely insane for them to say especially over the phone after just giving an expecting mother that information!!!! They should be fired.
Does this lady go on to say how her careers going
OBGYN here. That nurse is a eugenicist or the practice is a eugenics practice.
It was indeed unprofessional to a gross level, but the statistics don't lie, so I can understand her assuming that the mom wants to terminate the pregnancy since only 1 out of 6 pregnancies of babies with DS are kept. That doesn't excuse the nurse's actions, she could've provided open-ended options
I’ve had 4 kids and had some awful and unprofessional nurses throughout all pregnancies. It’s so common it’s sad especially when it’s the most vulnerable point in a woman’s life
As a PA-C, I know that it’s inappropriate to give life-changing news over the phone. You ask them to come in, tell them to bring support, then strategically break the news in a controlled environment.
You can feel the love when she speaks about her son. So beautiful
One thing i love about this podcast is how kind and patient devorah is towards her guests, You can tell shes always supportive to anyone who has come on the show. (we love you devorah!💖)
Definitely one of my favorite interviews. You’re so good at interviewing people and engaging in active listening that I think it helps their story continue to flow. Great job :)
30:27 leaving the hospital without your baby is genuinely the worst feeling in the world.
My 2nd son was in the NICU all of Dec 2020 it was one of the hardest times of my life. I wouldn't wish it on my wost enemy
Not to my mother 🥵🥵 she left me in the nicu for two months and used to pop in and visit every now and then :/
I’m sure you grew up to be a wonderful beautiful person in spite of this happening to you and I hope your mom is making it up to you now ❤️
My baby too had Down syndrome and they IMMEDIATELY asked when we wanted to terminate. Absolutely never. We ended up losing her at 17 weeks and labored her. It never gets easier
I have two kids and always have the utmost respect for mothers with kids with special needs. 💛
Mom of a 19 month old with Trisomy 21 here. Loved this episode and definitely could relate. You are doing a great job mama ❤️🫶❤️
I have a great aunt with DS. She's the funniest and coolest person I've ever met.
This story has inspired me. Wow, we need to do better as a society for real. Much love
I learned so much from this episode, Martha did amazing. I can see how much love she has for her son, I wish her so much strength and happiness with her little one
Huge hugs to you, Martha. You were so strong telling you and your son’s story. 🖤
I have two boys with special needs, and I totally get the journey and how alone you feel. I have not found a community yet and I’ve been on my journey for 11 years. It is very lonely.
My 4 year old son has autism, I had the same tooth paste situation happen to me and it’s been a huge struggle to cope with it and embrace it but I’m happy to say that he is loved by all of my family and he speaks now.. to all the mommies out there, don’t give up. Love your baby because it’s all worth it when your baby grows and reaches milestones. Every time my baby says “I love you mommy” it meltsss my heart ♥️ 🥲!! They’re human too and deserve all the love!
it’s repulsive that the first thing your genetic counselor said after giving you the news was to ask you to terminate the pregnancy. she seemed to see down syndrome as the equivalent to a fatal disease! as someone studying to become a genetic counselor myself, that horrified me. your story is so important for anyone working in prenatal healthcare
This was a wonderful and heartwarming episode. Thank you for bringing Martha on. I was absolutely floored when that nurse just blatantly assumed she wanted to terminate the baby. That nurse deserves to get fired.
I wish I had a friend like Devorah she's such a genuinely nice person it's heart warming
I LOVE this episode. Thank you for giving this woman a platform to share her story❤️
I was in high school and they were picking on a boy that was apart of the sped class and I told them leave him alone and he would come up to me everyday after and just talk to me. He introduced me to his classmates an d they were so sweet I met one boy in there with Down syndrome and I mean the sweetest person just give you hugs bc he was happy to see you. I saw him some weeks ago and he remembered me and it made my day. They are people just like us and better than us so called “normal” people a lot of times
So much respect to you Martha! And the fact that you advocated for your baby and never considered termination! ❤️
He's lucky to have you, as much as you're lucky to have him.
Beautiful story and such a lovely mother. Thanks for sharing your experience with us.
Powerful episode. Very heartfelt and emotional.
A touching and informative episode. It was so genuine. That woman should at a minimum have a formal complaint against her. How can anyone deliver news like this over the phone and ask when she wants to terminate. 😡
Thankful for her perspective ❤
It’s crazy that they still immediately ask about termination. And didn’t offer any support. Medicine has a long way to go.
Can confirm they still do this because my mum was asked this by her nurse when she was pregnant with me
@@w1tchy I’m sorry :( that’s awful. I get that some kids can have more health problems than others but it just doesn’t seem okay.
As a former teacher I will say the education world has come so far when it comes to making sure all students are included!!
What a strong mama! Thank you so much for sharing your story Martha!
I love this channel and this is one of the best videos on here. Martha told her story so structured/coherently, but we still got to feel the emotion flowing through her. I’m 17 weeks pregnant and was very anxious when I started watching (I’m going through genetic testing right now), but by the end, she made everything seem so much less scary.
my mom was a special needs teacher so it was so interesting to hear her react in such a way, im glad she embraced it. She used to teach classes that were collaborative, with gen ed and special needs kids so i think that's so great! growing up with the exposure will be great for the special needs community, even as a kid the difference between my attitudes and the other kids would upset me.
Martha you did a wonderful job telling us about your very special little boy. If mothers listened to that very uneducated ignorant nurses advice we wouldn’t have all these beautiful loving babies being born. Thank you for not listening to her I’m sure you just helped so many parents listening to your story a whole new light on this .God Bless You❤️👌👍🙏🏻
As a mom of a little boy with Autism I get the sadness. Even though you love them more then anything in the world you still have to go through the grieving process for the child that you thought you would have and the life you thought you would have with them. It does get better I wish I could just hug you. Couldn’t make it through this one without bawling.
This reminds me of my son’s story, he has a rare genetic brain disorder & it’s very similar story. We had to fight & beat the odds. We didn’t have any one doctor belittle him but we’ve had some tell us that we may not be doing all that we can as his parents. It’s hard to hear that some countries just terminate because my baby is so so special & has touched so many peoples lives. I know it’s not for everyone. It’s just tough to hear that some places are eradicating some of these disabilities. That’s so sad.
Such a powerful episode ❤ Love and thoughts to all parents in the world 🫶🏼
Thank you so much for sharing your story. ❤
My son is autistic and in my early 20s I work with autistic kids and wrote many essays on autism in college. Just like, God and the universe was preparing me. Thank you for your story. A little piece of me has healed.
Scary, I have two friends with special needs kids, neither is 'too extreme' and they don't need outside special help or anything but both families are wracked with dread of what happens when they're older or when they die and their kids inability to navigate the world, even if living at home, going to school and leading a mostly normal life is 'easy' at the moment
I can't even imagine what you went through hearing "when would you like to terminate?" That is so sad and not ok! I work with special needs kids everyday and they bring me so much joy and love. I can't imagine not having them, they are very much apart of the general population at school and all the kids love them! Stay strong mama! He will touch so many people's lives!
my mom had my brother 16 years after I was born and he’s severely autistic I’ve seen her grow more and more exhausted and isolated and my middle brother who wasn’t as old really didn’t get as much attention as I did the first born or my baby brother because he just consumed her time in a different way. It’s full time caregiving and I don’t know how people cope with the dynamic change my family’s dynamic will never be the same but me and my middle brother grew insanely close that’s my sonnnn now 🫶🏽
My son was misdiagnosed with down syndrome, and I empathize with her so much when it comes to the pregnancy.
When I was in high school I worked with higher needs teens during gym class. My school did have a class just for the students with higher needs and in retrospect I think the main reason they had it structured this way was because of lack of resources. There were maybe 5 or 6 gym leaders plus the teacher for 20+ higher needs students. They ranged from needing 1 on 1 attention to being a little more independent but still needed guidance where they couldn't be placed in the lower needs/general population classes. Many of the students were non verbal and we did our best to get everyone moving, to enjoy themselves and to be challenged. But we couldn't do things like organize a game of baseball, basketball, certain obstacle courses etc. The other gym leaders and myself were just their peers who were asked to volunteer to be part of this class and we didn't have any special training. To get all of the higher needs students in the lower needs/general population classes would mean every student would need 1 on 1 attention and my school just didn't have those resources. Its unfortunate but I think this division was also to protect the higher needs students from bullying and the already overwhelmed administration just chose the method of keeping students separated to handle it. But that was 20 years ago! So maybe things are evolving, but I'm not sure if the solution is as simple as keeping everyone in the same class together.
Anyway, that experience led me to working more with higher needs kids, teens and adults through my 20s and I really enjoyed it. I have so much respect for moms and families of kids/teens/adults with higher needs!
Amazing mama! Amazing host! Thank you
Yall eyebrow game is on another level 😍🖤
What an amazing mother & woman. So much respect.
I already know i'm going to love this ep!
Growing up we had a downs girl in our class. She was lovely and taught me not to underestimate people with downs! She had an indoor pool we would swim in and her nanny and mom loved me. I wonder if she would have benefited being in a class with special needs though bc she was kind of an outcast given no one could understand her. Except maybe me. She was so lovely and i know i benefited greatly from having her as a friend. I left a year later unfortunately and didn’t keep in touch as i was a kid. I think about her sometimes. I hope she is doing well
I understand with the heart monitor, i still have some trama from when my daughter was in thw nicu 3 years ago. She was only there for a week but hearing those beeping scares anyone! ❤
this is terrible medical care, it’s shocking that she was under the impression with an at risk pregnancy that she didn’t have someone communicating why a hospital birth was recommended due to the high needs for her to be left thinking she “might give birth in a birthing tub”, to go to the hospital and not bring anything as the doctor should have told them to prepare on the phon given how far along she was, to not have been given any resources, to her not being told about the potential of a NICU visit and not knowing what a NICU was. Medical care has become an assembly line and these are good examples of it.
I am glad she shared her story ❤
A great story. I work in a few homes that support people with Diverse Abilities. The amazing humans I’ve met in those homes have taught me many lessons in life and honestly made me a better person. I wish this mom a beautiful journey with her baby. Though I don’t understand her journey as I haven’t experienced it myself, I will always have admiration for some of the hardships families go through along the way. I can only hope society continues to be more open and inclusive.
I like the term diverse abilities! I haven’t heard that before, is there a more or less appropriate time to use this (to describe intellectual disabilities or neurodivergence, etc?) clarification would be super appreciated!!
@@bimbobonsA large portion of the disabled community doesn't use this term because it was put on us by able bodied people who aren't listening when we tell them not to. We prefer 'disabled/disability'. Please use that unless told otherwise by a disabled person.
I had given birth to my son with Down syndrome at 19 and I always had a connection with special needs
What an amazing mama ❤
Best episode
the NIPT test isn’t offered usually until about 10-12 weeks!!
my baby was in the NICU for a month and a half, he was 1 month to the day early. my placenta wasnt feeding him anymore. he was under so much stress. worst time of my life. changed me as a human.
Just as an aside, I did the genetic testing with both of my pregnancies and I think you have to be at least 10 weeks. This is basically right around when most people even realize they are pregnant so essentially yeah, right away.
In the nicu I had my sons diagnosis while he was in the nicu and they did the blood test while we waited I avoided it and ignored it, and I thought that they were wrong because I never had any pre-diagnoses and they’re only way of telling me he had DS was because of his facial features and my son is mixed when I was told my son had DS , it felt like they were lying to me. IT FELT LIKE a ton of bricks just fell on top of me I felt devastated honestly and I didn’t believe them either. I totally can relate to that when the blood test was pending, I remember a doctor came up to me to literally forced me to believe that my son had down syndrome and basically made it seem like I wouldn’t except my son if he had down syndrome, even though I just didn’t believe it because I didn’t have the results in front of me the way she spoke to me and treated was disgusting and it super common I feel like I never reported her either
The nipt test is offered around 10 weeks!
Can you get multiple cameras to be able to see more face and facial reaction to get the full impact of her Podcast?
My sister's baby diagnosied Jacobsens syndrome, advised to terminate pregnancy. Sad😢
They thought I would have Down syndrome in the 90s . It was my moms first child at almost 40. But she said no to the pre test. I was born & I ended up exceeding both of my parents education and with a higher IQ than both my parents. I’m glad she didn’t get me checked for Down syndrome. (Was a deep needle back then). It was not needed
Same!!!!
They told my mom I supposed to be born with Down syndrome too!! I was born in 99
May I please ask what headphones you use? ❤
the cat is so cute
I think she dealt with postpartum depression after esp with how traumatic the birth was
Choosing to keep a baby after a diagnosis is so strong and so amazing. There is still so much stigma around special needs individuals and it’s heartbreaking, that being said if you are someone who is watching this and happened to choose to terminate instead of carrying out the pregnancy after a Down syndrome diagnosis, I hope you aren’t feeling overwhelmed with guilt with this episode. Not everyone is emotionally or mentally capable of raising a special needs child and this might be controversial, but that’s completely valid. I can’t imagine how difficult that choice must be to make and any reason for an abortion is valid. Because at the end of the day, if you are not able to give a fetus the quality of life they deserve after birth, you are valid in ending that pregnancy. Period.
As someone who works with special needs children for full time work… am I the only person finding it so hard to believe that a medical professional would outright SUGGEST termination? I work in the medical space. Not invalidating her experience and it may be true. Just cannot imagine a professional saying this and… not losing their job? Little bit insane.
I am not sure about in America, but in the UK I've heard of it happening a lot, it's shocking I know :( even a colleague of mine had a surprise pregnancy at the age of 40 and she was heavily pressured to terminate at multiple stages, despite the baby being healthy and having no diagnosis, just her age. She did keep the baby and he was born 100% healthy and she's fine too. It's so crazy
No it’s true it’s happened to people I know personally!
It happens all the time. A CNA told me she'd rather be dead than disabled like me.
@@dirtygrubbygoblingirlJesus. how can you say that and get away with it..? I mean, I would lose my job QUICK for saying far less. Not that I ever would, I love the population I work with. ASD mostly, they are so amazing.
@@Ohiogang596we need to start reporting professionals that say 💩 like this. Completely disregarding anything other than a neuro-typical, able-bodied life. If the mother suggests it, that’s her choice! And only hers!!!
Gosh, this has to be DEVASTATING!!!
God bless her
love love love
Does anyone know any similar podcasts?
shame on that nurse, some people shouldn’t be in healthcare. Martha, you are so strong. i pray you have all the support in the world 💗
How old was she when she got pregnant?
People choose to terminate, and they have every right to. There is no wrong answer and decision for this - it has to be whatever the parents think is best for them and the life they think their child can have. But to outright ask (basically sounding like a demand) when do you want to terminate is absolutely disgusting. It should be, here are the options, what would you like to do? What do you think you can handle? And no judgement should be given with either decision. Im horrified by that genetic counselor.
never heard of the nicu, what…?
neonatal, for babies
@@fwestahyeah i know, im just surprised she didn’t know about it before. i would think somebody at the hospital or her obgyn would’ve informed her that the baby would need to go there after birth
she was very uninformed about the birthing process it seems. she went to the hospital on her due date and didn't expect to be induced
Im here for the cats 🥺
Am I wrong or at 53:35 did she say 1 in 6 kids are born with down syndrome?? It’s 1 in 700. Maybe I misheard but I played it back over and over and still hear 1 in 6.
I think she meant only 1 in 6 babies diagnosed with down syndrome are taken to term - 5 out of 6 babies are terminated 😢
@@dominiquegio4046 oh gotcha! Thanks for the clarification!
@domenicagiordano4046 that's......quite heartbreaking. Yes, it does make raising a child more difficult, and I believe in patients having informed consent to make decisions based on their capacity, but these statistics are so sad
@@Metroid250its ableism.
The cat is stealing the show 😂
I work in an allied health early intervention clinic, down syndrome children and adults are simply gorgeous. 💖💖
I liv in a shitty country in europe and yes, doctors dont think kids with ds are human :) when i was a baby my mom was basically an experiment, medicql studenta would come and watch the doctor poke those big needles in her (for the fluid). And when he did that he told her that i would most probably have DS qnd that she SHOULD abort asap, literally forcing her
Im so happy she didnt ofc lol but I DONT EVEN HAVE DS
Ableism and shit, disgusting
Lota of love 🖤
I think that is so weird that they wouldn’t interact the “special needs” kids with the rest of the kids when u we’re in school I interacted and even helped teach a class with them literally alllll the time when I was a student and that helped them grow in society
Beauties
just goes 2 show u self affirmations are fake Gos is not santa clause no prayers are answered
You’re lucky you knew and could plan before birth. I had a total surprise did not have a clue at 23 years old. She’s now 36 and everyone loves her❤ she had two holes in her heart. But yes it does get easier. The pediatrician told me when she was born to treat her like any other child you have because they are manipulators.
I usually love episodes from this podcast, but this one... The immaturity of this person, when she gets all warning signs and chooses to just IGNORE them (along with her partner) and pray for a better outcome by writing affirmations daily, is concerning. Sometimes there are cases when all you have left is to embrace the situation, however, this definitely wasn't one of them. Though the nurse was too harsh in suggesting about terminating the pregnancy the way she did it. Love to all kids with special needs.
it's not immaturity, it's grief. you're morning the loss of normalcy that you kind of assumed would be your normal. unless you've had genetic testing prior to the pregnancy, it's very hard to prepare for the reality your child has a genetic abnormality. clearly, you can't relate so don't judge.
where you get that cheese danny
Sorry but did she realize that her child will be able to find this video when his older?
That genetic counselor needs to be fired . Wtf?!
"So when do you want to unalive" BRO. I'm pro choice but honey, that was SO far out of line I'd be seeing red if I was told that.
If you're going though something similar to this woman, change the stigma about this crap! Genetics are a very serious thing but there needs to be more guidance according to how the family chooses.
Everyone in your lives did you guys a complete disservice by telling you and praying that your baby wouldn’t have DS. Someone should have sat you down and told you to face the reality with compassion! The lack of compassion from doctors and denial from family breaks my heart! The denial and lack of education is crazy! The fact that they went in to have him and didn’t expect a nicu stay is wild especially knowing the baby had DS. I can’t believe how in denial they were.
She says “like” waaaaaay too often.
that's what you took away from her story?
this is the only vid on this channel that i somewhat disagree with. and i LOVE this channel. I have seen every video
I agree…and why was she blatantly ignoring her doctors the whole time. But I respect her story and I have the utmost respect for parents of kids with disabilities. It is a lifelong commitment and a challenging one. Not to diminish the love and joy the child can bring, they’re not a mistake, but with severe disabilities like that one must consider the quality of life of the child and the parent. If it’s a lifestyle the parent is willing to choose that’s on them and I wish the best for them.
You can’t be serious? Wtf. People with Down’s syndrome are some of the most amazing people in the world. Just because someone has a chromosomal disorder doesn’t mean that their life isn’t worthy of living. Don’t get me wrong, im fully pro-choice and if someone wants to terminate for any reason, that is totally fine, but it is not selfish to bring a baby with downs into the world. Like what a weird ableist take to put out in the world. Embarrassing honestly.
Hm -not fair to the child? I feel like the child rather be alive
I have loved ones who are living a wonderful life despite having down syndrome, I'd rather you argue that low income and minorities may not have the resources to provide for a disabled child rather than that they don't have the same quality of life as a nuero typical stryotypically healthy child.
it is not an actual child yet because it is not born. Me personally- I would rather not be brought into a world thats so different, especially if i have the choice lol@@sarahwoodruff7229
Everyone thinks different. We chose abortion because we also didn’t want that kid to have to go through life being looked down on