Meet The Child Born With A Split Spine | Born To Be Different | Part 1 | Origin
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- เผยแพร่เมื่อ 30 ต.ค. 2024
- Three years in the making 'Born to be Different' is an extraordinary frank and intimate portrait of the pressure and difficulty of life with a disabled child.
It follows six families with six children born with very different types of disability through all the major milestones of their young lives.
From the initial shock of diagnosis, the series charts the day-to-day practicalities of coping with disability within the family; how everyone’s hopes and fears change over the first three years, as parents deal with medical problems, operations, and a welter of mixed emotions.
Some families struggle to cope with the strain, while others get stronger.
Part one concentrates on the first year in the children’s lives, when the differences between them and their peers first come to light.
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I don’t know when this was taped but I just wanted say that I was born with Spina Bifida as well and I’m in my forties. I use a manual wheelchair to get around because the opening on my back did cause more paralysis in my lower legs which doesn’t seem to be the case for Emily….and that’s wonderful!! I have a shunt too but there are many reasons why someone would need a shunt and it’s more common than most people might think. You will grow with your child so don’t worry about not knowing or having all the answers right from the start. So much has changed since I was a child that there’s really nothing stopping your child from achieving whatever their goals may be.
💖 Beautifully stated.
💐 God bless! 🦋🏆💎
God bless you, Dearheart!❤ Thank you for sharing your encouraging life story with us! May you enjoy a long, happy healthy life!🥰🥰🥰
what a wonderful comment about growing with your child ...while your goggling and seeing dr after dr i bet in the end the child is quietly guiding mum and dad on what they need ...your comment will help so many people xx
It was filmed in 2003 as I looked it up! They have done a follow up series every few years with the last in 2020. All of the (awful!) comments about these parents’ “selfishness” for carrying these babies can be left aside as Hamish is studying to be an engineer and has competed as a Paralympian. Emily was/is studying to be a nurse. Zoe was starting law school. Nathan dropped out of being filmed while William and Shelbie have sadly passed away. A lot has changed-you are very correct. As a teacher I work with kids of all sorts…anyone sitting in here going on about selfish parents either shouldn’t be watching this (if their whole reason for being here is to finger wag), while those saying that birthing a child knowingly with a disability is ridiculous need to check-it too because every-every-parent, human, creature on Earth faces life. It is a crazy trip full of highs, lows, pain, tears, happiness and unexpectedness. Expecting anything else to happen is short-sighted. I would know. My perfectly “normal” and healthy baby was stillborn at 33 weeks…seemingly with nothing wrong. My subsequent kids who were born healthy have all had challenges! Again…life!
@@pinlight97 people look at me and see me as their worst case scenario. It’s only been in recent years that society has recognized the strengths one like me would have being born with an impairment. I never understood growing up why people were always surprised by my upper body strength. It was like back then if you were labeled as disabled that meant you had no strengths….everything about what you do and how you do things is impaired. I used my arms (walking with crutches then eventually going into a manual wheelchair) twice as much as other kids my age so of course they were strong! Thank you for researching and finding the other follow up videos! I look forward to watching them. I’m so sorry you lost your little one. It never escapes my mind that had I been born some years before when surgery on a newborn was unheard of I most definitely would have not survived.
I teared up listening to the baby crying her little lungs out. Those poor parents
Me too
Same, she sounded like she was in so much pain. :((
I hope she don't remember it and grow up with PTSD!! In GOD we Trust!!
And has to come back and do it again in 2 weeks? Like there’s no pain meds for babies?! I’m not sure they’d put an adult through something like that without pain relief smh
@@juliabouzan1739 EXACTLY!!!!
The thing I hate most about being a Mum of a “disabled “ child, is people telling me how brave I am. It’s not brave to love your child and want the best for them and do your best for them.
The thing I am most scared of, is dying before my son. I have a terminal illness and have been looking for a foster family or adoptive family who will love my son and treat him as the beautiful person he is.
The thing that gets me so angry is people telling me they understand my fears of my son being a burden to whoever takes him after I die. My child is NOT a burden.
Oh i am so very very sorry for the situation you've been dealt. And i agree your son is not a burden! Children born with disabilities, if you will, are very special spirits. I believe we all chose our lifes and we knew of our trials but we chose them. And only the very very elite are chosen to be born with disabilities. They have less to learn i figure and go straight to heaven as they are innocent. They are truly special people. I hope you understand wat i am saying. Its almost 4 am and ive been awake for 2 hrs so im a bit groggy. Lol. I wish you and your child much love peace happiness and better health. Ill be praying for you....my oldest son is mentally ill and a severe addict. So i know its different but its not. Hes in a facility now. So i get it. My prayers are with you
@CatKabs thank you for your kind thoughts, unfortunately my parents are no longer with us, my sister has had two strokes and my sister-in-law treats my son like he’s an idiot. I am looking for foster families and now have about half a dozen people who will look out for him and two families who are serious about fostering him when I’m no longer capable of taking care of him, bless. His father wants no responsibility for a child, let alone a child with “special” needs. I’m not as worried as I was previously, thank you.
I can remember being introduced to a new group of women as "the mother of the spina bifida baby."
@@carolegodde7816 wow, that's so...
I have so many words that are not TH-cam suitable. It says so much about the person speaking.
I love your attitude.❤ you see your child as not being a burden.
My best friend in elementary and middle school had spinal bifida. She was an amazing person with a heart of gold. She died when we were 15. I miss you Amy!
My daughter was born with Cornelia De Lange syndrome. A rare genetic syndrome. I had no idea until she was born. I was 23 and my husband was 25. We were both healthy and there was no reason to think anything would go wrong. She's 35 now, mentally about 7.
I love her more than life itself. 💛
You're a wonderful mom ❤️
@@absolutelyridiculous6743
Thank you so much. That means so much to me. ❤
i am praying for you also
@@kimmie965
Thank you so much 💓
@@ronniebattle1310
Thank you!🧡
My husband's sister has down syndrome and was only diagnosed months after birth. Her symptoms are not that strong, it affects mostly only her speech/language learning. Now at 22 she speaks well like a 3 or 4 year old would, but she can communicate and the older she gets, the better she speaks. She is so loving and such a joy to be with. She is a blessing.
Mentally I would say she is like a mix of a 5 and 15 year old. She is so mature and well spoken sometimes, but can also be jealous or angry like a 5 year old would. But 80% of the time she is happy, loving and great 🥰
Months?! The signs should have been evident upon birth.
@@mindyschocolate but it wasnt because she doesn't look like she has down síndrome, she doesn't have much of the typical features. And they didn't do a blood test to check for it since they wanted to keep any child God gave
As someone from the U.S., I just kept thinking "...and then just add in the stress of trying to afford medical care if you're in the U.S."
There are millions of grants, free children’s hospitals that are better than some paid hospitals, you make it sound like America is awful.
Children are treated slightly better than adults here. Hillary Clinton managed to pass the Children's Health Insurance Plan (CHIP), to cover children from lower income families. All should be covered. Richest country in the world. We can send billions to help Ukraine (and we should) but we should also have universal health care. Richest country on earth, republicans. The GOp has ruined America a thousand times over. We could be so much better.
Yes. Indeed.
This is a very misleading statement. In the US there is a program called DDD. These children are covereed by this insurance and they receive exceptional care.
@@melliegirl520 What is ddd? I've never heard of it.
My nephew has Arthrogryposis, I am so happy Dr's gave him some pain relief when being casted. To hear them SCREAM is horrible!!!
I'm the mother of a 35 year old, profoundly autistic brain injured son. He is 6 foot 3 inches, 240 pounds. He is non verbal and still 8n diapers. I've given up my entire lifetime to love and protect my precious son. The world hates my son and me because they don't like the way he walks, the sounds he makes etc. I am scare to take him into the world because we are stared at, mocked and threatened. 35 and a half years doing this by myself because my husband couldn't handle the situation. I have no friends, never got the opportunity to meet a good man who would love me. The only places we go is to Walmart. Stay strong my fell9w parents. Get close to God.
My grandson, who will be 20 this year, is severely autistic, and my daughter has devoted her life to him. Her marriage has not survived. I am so sorry that you are feeling so isolated and alone. My daughter was able to find other parents of disabled children via the internet, and have conversations with them. She also stayed in touch with people she knew before her marriage and having her son. I'm sorry to say, I don't know what groups she joined etc. but you are not alone!
Bless you
Thank you for sharing. You are strong. I work with autistic people and their families. Knowledge of how autism affects the person and family is slowly growing. I am sorry you have experienced this loneliness. It is important for you to reach out. If it's not available in your community try to get online. You and your son need love and support.
I’m sorry people have not treated you fairly. It is a shame people can be so mean. I saw a short yesterday of a disabled adult child with his stepfather. He married mom when the boy was 6. The stepdad was with him at one of his appointments and you could see the love between the two of them. Not every one feels negatively about people with disability. I’m sorry for the way you have been treated. I’m praying for you and your son. God bless you!
When my son was born he had an actual knot in his umbilical cord. They don't know how long it was there. He was blue when he was born. They immediately started working on him, trying to get him to breathe. He finally took a breath but he didn't cry. He was diagnosed with PDD when he was 3 and ADHD when he was 6. He is now 18 and graduates from high school next Friday (the 13th 😬). In the fall he is going to a technical college to study gunsmithing. I feel truly blessed to have him. His "disability" is no where near as extreme as these children's. I have never treated him like he has a disability. I have a daughter too. She is almost 11 years older than him. She was always freakishly intelligent. She has a ridiculously high IQ. She has always looked out for her baby brother, protected him. When kids in the neighborhood tried to bully him and called him a retard, she kicked their ass.
To anyone out there. I was a scientist, then a mom to a healthy girl…. and then I had my son. He was born with SMA, Type II…..So fully wheelchair bound for life (this isn’t the case anymore as there are good treatments in the last 5-6years, good enough that kids w his illness that are treated asap…. can walk. My overall point is that had I’d known how much his little body would struggle…. I probably would have opted to terminate….. I thank fucking whoever in this universe that I had no idea. Yes his body was broken and we spent weeks on end in hospital for the first several years. But man my little boy had more personality and attitude and silliness than I ever could have expected…. Even after losing him at the age of 10….. I would do it all over again and again and again. He brought so much joy to our lives (and I had a mini sarcastic me to back me up 😉🥰). Just thought I’d put that out there….
Thank you for sharing your journey with your beloved son. ❤️
I'm very sorry for your loss.
I am so incredibly sorry that you lost him.
Thanks for being real and sharing your thoughts. I'm sorry about your loss, but sounds like he was the light of your life!
I am so sorry for your loss, but I am so glad you got to enjoy ten years with a beautiful soul. Every life is worth celebrating. ❤
It breaks my heart that Emily's mom was feeling so depressed and alone. But her husband was so loving and supportive. What a beautiful family.
My heart goes out to these families and their children. May the children have long, happy, healthy, and fulfilling lives.
Love to your sweet families,prayers!
Raising them until adulthood is the easy part. Adulthood is the difficult part. Bless all these families. ❤❤
I was born with spina bifida, and it breaks my heart that people abort babies with this diagnosis. I live with a high quality of life because there are so many treatments that can improve life with SB. I’m getting ready to start a series+of videos on spina bifida to raise awareness that it’s not the doom and gloom scenario that a lot of doctors make it out to be.
Thank you for sharing. It makes a difference coming from a person who experiences this firsthand.
There are also people born without any physical issues that wish they had been aborted.
It honestly feels like eugenics. It is a slippery slope. Thanks for sharing your story!
@@xythrialwhat a bizarre thing to say
@@xythrialaww, are you alright? You don't know me but I'm here if you ever wanna talk
My baby is 9 months old with arthrogryposis, a genetic type. It's been very hard but he's such a joy and I'm so thankful
My granddaughter has the same...she's 4 now,b and can do a lot more than people think....if I could give some advice, never give her pitty, she can learn to write and do a lot of things either with the mouthe or feet....and fight for everything you need...you can do it, she's a normal kid that just has to do thing in a different way.... I send a prayer for you and your family...jah bless
Sorry I didn't read u had a boy.... blessings
I have a friend who's a mom to a baby like that. She took one look at her little 6 pound bundle and said "Oops!" XD Tammy is almost a year old now and she's a sassy little bean
My cousins son had club feet. It was from her sitting hunched over a desk all day. I too had a desk job with my last baby but I made sure to stretch up straight as often as possible so she could move. She had a problem with left foot but almost constant physical therapy and high top trainers saved her from surgery.
My son (oldest 12yrs now) was also born with arthrogryposis. He’s condition is called amyoplasia. Only his arm are affected. Thanks to an amazing doctor at Shriners Hospital, my lil man can use his arms. 4 surgeries later he’s going strong! God bless all of you with wonderful gifts that god only trusted the strongest parents to raise. I know the pain and the struggle but the milestones and challenges are so worth it! ❤❤
Our special needs daughter passed away in 2014. We got almost 10 years with her. She was an absolute incredible beautiful miracle. She had Cerebral Folate Deficiency and Cortical Dysplasia which both led to intractable epilepsy. She had 4 craniotomies before she was 3 and had three lobes on the right side of her brain removed as they never developed correctly and were causing the thousands of seizures that she couldn't physically handle without shortening her life and quality of life dramatically. She never walked or talked but she could giggle and hop around like a little bunny. I miss my sweet Kenna bear. ❤️❤️
Our other two children were both "typical" so I too blamed myself when Makenna had so many issues. "What did I do wrong?". But it was just....one of those things. My sweet Kenna.
@@fivemjs I'm so sorry for your lost 😭😓
Sorry to hear that you 've to endure what hasto be the worst pain sending hugs, may you receive some comfort.
@@blackswan5095 God has absolutely provided comfort!! I know she is healthy and whole and we will be together again soon.
@@fivemjs It's a blessing to have that assurance, those who have transitioned as we who are still here waits in anticipation to once again be united never having to be separate.again
The incredible strength and love of these parents is amazing, May their futures be bright !
I am disabled and I am okay. I am 40 years old with autism, unknown neurological condition and a rare movement disorder. I can't walk, I live with assistance. I have in home assistance who helps care for me. I also have family members who are helping me as well the government. The government helps my family to be able to care for me while I live on my own. ☺️ I will never be normal. I teach people how to accept people. Love is the best way to give support, it starts with acceptance. ❤️
U r an amazing person, people should feel really lucky 2 have u n their lives...💯👌😁
Ugh as a mom it hurts so much to hear that baby crying.
Also can't believe that poor woman's husband left her and the kids.
When that little boy started screaming in pain I couldn’t watch anymore! My heart broke down
These family's are extraordinary... The hardships of having a disability yourself are astronomical.. having a child with a disability is one thousand times harder.. you are all doing great.. best wishes to all
I have Tuberous Sclerosis, diagnosed at 8 days old when they found rhabdomyomas (heart tumors associated with TS) in my heart. I’ve been fortunate enough to not be very effected by TS developmentally, although I do still have tumors in different parts of my body (brain, kidneys, heart, etc) that I have to have monitored via MRI yearly. I’m really glad TS is becoming more widely recognized by the general public :)
Jesus Christ man you say that like it's no big deal
I can’t imagine having this happen. Regardless children are a blessing from God. God bless these families with continued health, strength, and hope.
Y’all have such on Amazing and Positive outlook for your babies! Please don’t ever lose that!! I know there are very difficult days ahead with Doctors visits and possible multiple surgeries but please Never lose that. It’s imperative to their survival and development to receive positive vibes from both of you! God bless all of you and I will keep y’all in my prayers 🙏🏻❤️🙏🏻
Thank you, mothers, for being brave with your children. Thank you for not giving up on them, and for not aborting them, but for giving them a chance of life no matter the hardship. I salute you. I'm sure your children will thank you in the end.
3:47 Mom and Dad are in it for the long hall…Moms already learning the crazy big medical terms like a pro! That’s step one. Knowing what may be expected of you and being ready to get on with it and make sure your child has the best life possible. I’m gonna love this one!! I can already tell! We are dealing with some very strong human beings here!!! THIS is what I call a TH-cam gem! 💎 God bless everyone of you!
All the beautiful unconditional love of parents towards their children is heartwarming ❤️
Baby Nathan looks like a movie star. He's gorgeous.
May God bless all these children!
Blessings and prayers sent to these children and families. Thank you all for sharing your story. All children are miracles and can teach us many glorious things, if we let them. Godspeed to all 🙏🌹
Williams store really gets me. My daughter is 5 and has epilepsy, autism, SPD, nonverbal autism and ID. Hers is from a rare genetic disorder.
I hope he's doing alright
Also Hamish is super cute....I hope his parents accepted him more as he got older
I have ID.
Lilblacklamb…. TLK2 by any chance?
@@devanwevenbobevenfefifofev2105 no WDR26 and HS6ST2
@@lilblacklamb222 Ikr, they were awful...like Williams parents to me...
What an inspiration !!! I'm so glad that I watched this...needed to see truly happy people shining with love.
Poor baby sounded like she was in a lot of pain from stretching her legs with the cast. 😭
I had to fast forward
I wanted to hit the doctor Nd take the baby Nd hold her....my heart fell out my chest
This is so so sad, they can't give the baby some type of pain meds during this process... My Lord that would kill me if my child was in that much pain..
I know ..but that young have no hard bone..just soft bone that is why they have to do it now it is still hard to watch🙏🙏
Only way to do it, while the bones are still malleable … they do this with kittens and puppies also who are affected with “swimmers syndrome” and the bones are moulded back into place , it’s amazing how much a cast can do for future mobility when it’s done in time.. but yes the crying was painful to hear. I had to mute
These are heroic moms!!! God bless them all! Beautiful babies!!!
Moms AND Dads!!💜💜💜
@@maburg713 God Bless you!!!
@@hallymariah45 - 💜💜💜
They're parents
They're parents who loves and cares for their babies, I'm sure they fear the unknown. I pray they all have the best outcome and remain in love with their greatest gift and responsibility.
This documentary looks very old, the children must be grown up now, hope they're doing well, very difficult to watch that baby screaming.
Every one of these babies are so gorgeous! Every parent desires a happy, healthy baby; however, it is not always possible for reasons unknown. Making the very best of life for each child, disabled or not, filled with love and TLC, is what is most necessary! Take one day, one issue, one moment at a time! Each child can learn and some things will be hard, but some easy! Celebrate all the "ups" along the journey!
They I too notice that , all babies are spend hours just watching videos of babies.
You know that hurts by the way she is screaming bless her heart ❤️
I've been through the process they're using. Serial casting is very uncomfortable (if they're doing it right) but I wouldn't call it painful. Then again, I don't have her specific disability, and it was done to me as a teenager. The baby's doctor may have also been pushing it farther to make her have to go through fewer procedures. I think they should have at least given her some pain medicine though. 😢
@@kreestoru up😊
Babies cry for many reasons. I’m sure wet cast isn’t pleasant.
All are beautiful children.a blessing.
The pain this little angel 😇 💖 must go through when they have to manipulate 😢 her tiny legs 🦵 makes me cry 😢, hope all is going well for you all now.
Very beautiful, parents, and babies ~~
Oh my little Zoe's mom. I totally feel you as a mom to a child with clubbed feet. Those castings. They are the worst. And I too always blame myself, and only got to hold her for 10 seconds after birth too. I wish I could give you a hug.
WOW all the babies and families in the one hospital room.
I was born with a deep dimple at the end of my spine. Right in my butt crack. The Dr xrayed me at 2 days old and told my mother another couple of centimeters and my spine would have been born open and deformed. I'm so blessed.
This is called a sacral dimple - the majority of the time, it doesn't cause any medical effects. It can be a symptom of spina bifida occulta - I was born with the same thing.
My son has the same. My MIL had an infant with anencephaly, who survived for a couple of days. Both my husband and I took folic acid because we knew of the risk. Be aware if you have children to really pay attention to the folic acid.
@@karenneill9109Folate is really better. Especially for somebody that has issues with something like that. People who have undiagnosed mthfr mutations don't convert folic acid correctly so it's like having nothing at all. You both should probably get tested for that because there are things you can do to bypass that for a healthy child. You just have to be careful with diet.
My late best friend was born with Spinabifada in 1972. His spinal cord grew in a knot between L-5 and the Sacrum joint in his spine. He had to have his right leg amputated in 2012. He died in 2013, age 40, from complications of that surgery because the surgical sight refused to heal properly. We were best friends from the first day we met in 1979. I was 8 he was 7. We met at Vacation Bible School. We were as thick as thieves. We did try to date at ages 17 and 16. I treated him like a human being who had a disability but I seen him as someone who may not have the use of his legs but he was still a human being in my eyes. We graduated together in 1991. His mother hated me because I treated him like a human being not like someone with a disability. She babied him almost all his life until he put a stop to that when he was 19. He moved out to live on his own. Even though we went our different directions in life after graduation but we kept in touch. When I didn't hear from him on the day he'd call me a gut feeling ran through me like a knife. His big brother called and told me he had passed. I was heart broken. It hit me very hard as my best friend passed. He was still so young. But when he found that he had a deep scratch on his thigh just above his knee he didn't go get it looked at right away. He waited until it was found to have turned gangreneus. That's why he had to have an amputation. When you can't feel your legs you don't know how bad a simple scratch or cut can become. I have 2 other friends that were born with Spinabifada. Both are female friends. One developed Charie Syndrome. She was my roommate during our 1st year of college (1991 - 1992). I was forced to quit because I was pregnant and unmarried. She graduated college in 1995 / 1996 college year.
Though I am aware of epilepsy, why are the "seizures " called "fits" in the UK?? It seems so very harsh especially with the babies, God Bless them all🙏🏾🇺🇲👩🏾🦳
I agree totally. As a healthcare professional in the USA I don't like that word because it sounds like the child is doing something on purpose. It's not as if anyone can control a seizure. That is a very ANTIQUATED term.
They are not fits. They are seizures. No one can control seizures.
I had a brain injury before I was born and was diagnosed with having cerebral palsy right when I was born. I was also born 7 weeks premature and had hydrocephalus. My mom told me that the doctors said to her and my dad that I was going to have cerebral palsy, but at first they didn’t know what type I would develop. Now my parents and I know, that I have spastic hemiplegia cerebral palsy.
This was brilliantly done, we really connected to each story. These parents are the real heroes in life. I would need a good mental health therapist in their shoes.
That tore my heart out seeing that newborn scream 🙄😢😢
God bless these parents and their children. I have so much admiration for parents who love their babies so much.
I have a disability (aspergers sydrome) seeing people (both adults and children) who are severely disabled makes me very grateful to God that despite my disability can still look after myself as well as someone who has no disability.
I had a trisomy 13 baby. After all the information about prognosis, my husband and I decided to let him go. We signed a Do Not Resuscitate order on him at 3 days old. He died at 12 days old. He would've had surgeries his whole life & still be blind, deaf, with major organ problems. We had a 2-yr. old daughter at the time & I couldn't see spending all my time on this baby that would tax the system & ourselves. If I knew the baby had trisomy 13 during my pregnancy, I would've aborted him.
That is a very rare genetic disorder. I am a healthcare professional and I can tell you I would not have been able to do that. The way you worded how you made your decision sounds pretty heartless.
@@detrajackson5992 wow. You haven’t been there, from your statement, you don’t know. You dont get to judge someone for making a decision for their child. You can make your decisions for your own child. This commenter shared something highly personal and painful, and you have the testicular fortitude to judge them. Especially rude for someone who claims to be in the medical field (note - I’m not doubting you are a healthcare professional, merely that I don’t know you or your credentials)
@@detrajackson5992 First do no harm? Or forgive those who know not what they do?
@@detrajackson5992 If you're a health care professional then you shouldnt be so judgemental, don't they teach that in your line of work?
I appreciate your honesty in a heart breaking situation. If God had wanted him to live he would have lived in spite of what you did.
Bless these parent, tough road💕
It’s hard having a disability. But you can get thorough it. I have a learning disability.
His spine split
I feel like physical disabilities are harder because so people experience chronic pain that no painkiller can fix.
Same here except mine was the result of my father shook me when I was 6 years old. He shook me so hard I couldn't hold my head up for 2 hours, I had a massive headache, severe vomiting and my eyes still have "flicker" issues if I force myself to read past a specific length of time. All my father did was give me an asprin and sent me to bed. I was at home with him alone while my mom took my 2 elder brothers grocery shopping with her. I'm 52 and because of my father I, still to this day, have severe migraines, comprehension problems. If things are not explained to me in simplest terms or shown to me in full detail I won't understand what you're saying to me. I had to repeat 1st grade because of my disability, I was held back my 1st Sr. year because I wanted to test myself to see if I could make it on my own outside of the 8 years I was in the LD system. It proved to be unsatisfactory for me. I wasn't going to graduate in 1990 because my graduation credits didn't meet the requirement of 18 credits. My high school gave me the option to quit, get my GED or go back for another year. I went back, got back into the LD system and graduated high school at the age of 20 years with 19 1/2 credits. 1 1/2 credits more than I needed. I'm disabled now from osteoarthritis of the spine since the age of 18 years, diagnosed in 2009 at 38 years. Since then I have severe nerve damage in both legs, feet, right arm and hand. It sucks. I can say this though, I survived SBS (shaken baby syndrome). Not many survive that. There are a lucky rare who do, but we deal with the disability we endure for life.
@@fandoria09 That's heartbreaking, I'm so sorry
As a mother to a baby girl with Spina Bifida. The way the narrator presented this information is frustrating. Many things cannot be determined in utero regarding “brain damage” they can however see hydrocephalus, ventricle size, lesion level etc. however they CAN NOT determine “brain damage”
Good Afternoon!!
I have spina bifida & hydrocephalus as well. I'm in Manitoba, Canada with 2 kids🙂
You are correct! I have a great nephew was was born with spina bifida and hydrocephalus. The spb was corrected y surgery the day after delivery. However his broken femur in one leg was not addressed until day 3. The grandmother had continued to tell the nurses that that foot was blue. Reply was spina bifida’s babies feet are often blue finally on day three it was investigated. By that time permanent damage had been done. He has/had the drainage tube for the hydrocephalus. We were told the average age of survival is 16. He is now 23 but confined to a wheelchair and has urinary incontinence. His mental age is that of a young teenager probably. however he lives alone and picks up produce from the Farmers’ Market and sells it in the little town where he lives. His grandparents have assumed his care since birth and live close by. The mother was on drugs during the pregnancy and probably did not take her prenatal vitamins which are a MUST. T brain must have some of them for normal brain development. Of course there have been numerous health problems over the years.
I know!!! I'm a 24-year-old patient and I don't have any brain damage.
This was filmed in the 90's....
I pray for all of the precious babies.❤ 🙏🏾
@@alpinoalpini3849 take it up with God. I would suggest tho, that your arms are too short to box with Him.💪🏾Hes all Powerful. Now give it your best shot. And let that marinade.
Thank you to parents who sincerely love their children with special needs. Thank you for the struggle. Thank you for your patience. ❤
I was crying when they put that plaster on her 😭 oh my goodness. Poor baby
There are so many different problems these parents have to cope with that I am thoughtless. I hope the doctors can things of ways to help these babies.
Vertically challenged is something that an be dealt with when the child is surrounded by positivity .
How are the kids these days? Any updates on them? Watching this makes me feel worried for the babies
Shelbie has sadly died
Emily Zoe William Hamish and Nathan doing well
I am friends with Williams family they doing well
Do you know if the rest of the episodes are able to be found somewhere? I’d like to watch the rest! Glad most of the kids are doing well!
Clearly that baby girl's ligaments are being stretched to the limit! God give her parents strength to endure what is in the best interest of their child
A friend of ours had a son with Spina Bifida. They did surgery in Utero at CHOP in Philadelphia. He was born with some disability but not as severe as it could be. Medical advances are so amazing.
My own son was born with Omphalocele. That is a whole different defect.
I am going to say a few things: As a healthcare professional, I do not like the word "fit" that they use in the UK because that implies that the baby is misbehaving or something like he can control it...he is having SEIZURES. Also, baby Williams parents are selfish and weird. She called her baby a "project" seriously?? The baby didn't ask to be born, and again it's not like he did this on purpose so he can mess up his mommies career.🤨 Lastly, so many women when they are pregnant that worry about who their child will look like and if they will be cute. Should pray for a healthy baby because so much can happen! All these babies are so beautiful! It's life changing to have a child born with a disability. The need for supportive services are very important.
Simple cultural difference- "two countries separated by a common language."
In British English, fit does NOT mean 'throwing a fit' as it does in American English.
Hearing that little baby girl cry was making my mommy mode go haywire. I wanted to jump then my screen and go hold her. But can I just say one thing to her mommy and all the other mommies out there that struggle with hearing their baby cry during vaccines, procedures, etc and have to leave the room or step away like this mommy did… please don’t. Please stay. Please don’t leave your baby to cry all alone. NOBODY, AND I REPEAT….NOOOBOODDYYY is going to think that you… enjoy hearing your baby cry, or that you….. WANT to see them suffer or cry. But can you imagine being brand new and all snuggled up safe and sound in mommy’s arms only to be placed on a cold slab, unswaddled, suddenly in pain, scared, confused, and mommy is nowhere in sight, and not in earshot either. Your baby would much rather be in your arms if possible but if not, then at least able to feel you there by your hand or finger and able to hear your voice, the most calming, soothing sound in their entire world. How YOU feel during your babies first real time of need IS IRRELEVANT. It’s not about you. I think some girls think it makes them look like a good mommy bc they think the alternative to leaving the room because you can’t stand to hear your child in pain, must somehow be that if you stay you must enjoy hearing your child cry in pain. Idk but all I can say is please stop doing this. You’re supposed to comfort them. It isn’t about you. You can’t handle it?what about them? Do they get to leave the room if they don’t like it? No! And neither should you.
Having the mother snatch the child and run, break down sobbing on the floor, or strike out at the doctors wouldn’t be good, either. People aren’t made of stone. We can only do what we can do; we can’t do things we can’t do. Having Mommy hospitalized for weeks because of a total nervous breakdown would be worse, no? 🤨
I think parents need to consider the child more often. They could be bringing a child into the world who will know a life of mostly pain and suffering, with some happy moments sprinkled in. They only think about themselves and how they will feel. But it’s still an impossibly hard decision.
That mom that knew she was a carrier of the genetic decease and still chose to have another child... I'm horrified. Pure selfishness.
Beautiful beautiful people ay thank you for sharing.
I’m a say woman who the challenging times of my son and senior now however, I must say you’re doing beautiful job and William is beautiful and every question yourself I’m sure you do someday you were doing a beautiful job raising William God bless you and merry Christmas💕💕💕🙏🇨🇦
They can do the surgery when you are still pregnant if they know and that saves 80% of the children that would be born with SD if you are in the United States.
My youngest brother was born with severely clubbed feet. The surgery to straighten that out, that's... rough. Rough on the kid. Rough on the parents. Poor Zoey. All four limbs must be twice as hard to bear. My mom kept the casts too, they're still in the closet. He just turned 22 last month.
I’m glad to no that you , kids and husband have a good time in Hawaii! Sorry that he catch COVID. Hope fell better soon. Take care . Hid Bless. Sweet Angel 😇.
The first baby has wat my granddaughter has....we are just doing surgery on both legs and no movement in in her arms...she is 4 now and the happyest kid in the world....mi never allow any pitty for her...sometimes it's allittle brutal, but will do her world of good....all the procedures that must be done is tough...but we are tough, we have no choice....and my girl will walk, one day...jah bless
Michael said he wasnt gonna walk out, 2 years later he walked out but not before knocking Annmarie up again..He went back to his other baby mama 3 hours away. It's one thing to leave because you're not happy in a relationship, but he totally abandoned his children.
Children having children.
@@sharim he didn't look like a child he was at least 25
I have Cerebral Palsy and I’m in pain almost every day.
I’m sorry you’re in pain, my heart goes out to you xx
I feel so bad for ppl with rare disabilities. It’s bad enough I have to go through 2 disabilities. 1. Dyslexia. 2 Attention-deficit/hyperactivity disorder. I have asthma and bronchitis. I’m suffering everyday with a lot of confusing on how my life will impact me do to my slow learning and my brain is so proactive. my asthma slows me down as I get hyper which makes me hyper but my insomnia kicks in which makes it harder for my brain to function properly. causing me to lose memory kinda hard living like this because ppl always question me on why I’m so slow.
Beautiful babies
Children are a gift and a blessing from the Lord these kids are very beautiful and are able. Nothing is impossible for the Lord
If nothing is impossible, He should make them healthy. That could be a nice start.
I have a shunt due to hydrocephalus. My first was put in when I was 5. I had a revision when I was 25. It’s now been 27 years. So, here’s hoping 🤞 that it’s my last. Shunts are fickle little things, though. They could last for years, or only a few hours.
Nathan should do the army crawl! I know lots of babies that crawled that way! ❤
All are living Angels on earth 😇
A lot of kids still go without being diagnosed with autism. I met this little boy when he was 2 and in the first five minutes I knew he was autistic. I talked to his mom and convinced her to get him tested and she did. Him getting diagnosed early means that he would get his special needs met and have a better outlook on life. My niece was 7 months when I picked up on her stimming and I told my husband that she has autism but the family wasn’t trying to hear me. When she was about 2 her mom told she has a bad body order and I told her once again she needs to have her tested for autism and they can check her hormones. She finally got her tested and she has been able to get her the help she needs.
The 1st baby ain’t gonna remember none of that. So stretch em now.
I don’t care for lemonade. But I drank pink lemonade 24/7 during my pregnancy. Turns out it’s loaded with folic acid. When she came out u could see where the spine mad literally closed with the last month of pregnancy. She almost had spins bifida
I don't understand the parents who knowingly bring babies into the world with severe disabilities believing it is a loving act. It is so cruel to put them through such unnecessary pain and suffering. Give these souls the opportunity at a healthy body in the future. This is not the only body available.
Vicky is awesome… She doesn’t believe in abortion and accepted it and faced it… poor kids I feel for all of the mothers bleed the kids and bless the parents.
Parents your amazing
Omg Emily is chubby gorgeous baby I love how chubby she is.😊❤
Love this ! ♡ i had no idea there could be a "physical" reason for autism (and im autistic). We need to study it and educate more! ❤
On this note, i cant believe she keeps saying "mental ret**dation"!
Your little one is beautiful she will be okay, might have to do somethings different but no matter she will find a way.
Mothers who go to have even more babies, then come away w/ another baby born defective like the one previous. Why do they go on having more babies. God, what a trial. I could not nor would not deal w/ that sort of thing. How stressful, taking care of a terminal baby all it's life. Not me.
"Defective"? "Trial"? Really? Just because you can't handle something doesn't mean you need to come to the comments and call someone else's child "defective", describe their life with their children as a "trial" and criticize them for having more children.
Anna Nardo.... then i am sure God in His wisdom will not burden you with such a trial!!! You sicken me!!
Cried all the way threw. What loving amazing parents.
They tried casting and a brace on my left leg as a baby. I have mild Cerebral Palsy. Didn’t do much my left foot being turned slightly don’t hinder my walking.
I was born with Spina bifida, at 14 months old had such a severe case of bacterial meningitis that my meninges were pretty much wiped out ....I have had a shunt ever since...I wasn't allowed to do sports...I have had 54 shunt revisions ...I am blessed by C-Section with 2 healthy son's....I can walk, etc ....I am truly blessed ❤️
Ohh no I couldn't take that how her baby is crying like that .They are hurting her poor baby girl 👶🙏🙏🙏🙏
I’m curious if the age of some of these parents had anything to do with why their children were born with disabilities. It’s been well documented that older couples have a much higher chance of having a child with difficulties. All the children are beautiful no matter what. I wish all of them so much luck in the future.
They are all fairly young by the looks of it. I have a syndrome, I’m missing my second X chromosome. My parents were 25 and 26 when I was born. Quite young.
The only one would be down syndrome however the one baby with downs the mother was 27 although she looked like she was in her 40's tbh...
When she said she'd run and scream get off my baby" I felt that
Ouch, can't they give cases like Zoe some kind of pain relief while doing that? Even though you can't typically remember things from being that young it still looks incredibly painful. Is it as painful for them as it looks?
The body remembers even if a mental memory is not present. I think it's barbaric to not give her some level of sedative for that procedure
@@toscatattertail9813 yeah 😞
Poor Zoe. Must be quite painful to force the feet into a normal position. It’s needed yes, but it still hurts to watch
Where is part 2? Are there updates? I cant find anything
Beautiful babies....poor thing