Sophia's Birth Story
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- Опубліковано 23 вер 2017
- This is part two of our birth/diagnosis story. This video is a long one, but it tells what happened during and the first weekend after Sophia was born.
A few points we wanted to clarify:
Most of the nurses were great, we felt a lot of support from the hospital nurses and our hospice nurse.
Also, I didn't mention how big Sophia actually was at birth, and that was 3lbs 13.7 oz. A good 1.5 to 2 pounds less than predicted.
I have been a nurse for 34 years. I just recently became a FNP, and watch many medical videos on UA-cam. I have followed your story for a few years and Sophia is a doll. I almost always stand up for medical professionals, and I am a big advocate for quality of life. However, it doesn’t sound to me that you were given enough options for how to handle Sophias birth. All of these discussions should have taken place prior to her birth, such as did you wish for only comfort care or resuscitation. Then your wishes should have been followed 100%. No question, and without judgement. The decisions in feeding and oxygen should have been decided previously so you didn’t have to make those decisions during an after an emotional birth. Sorry you all had to go through this situation. Please know that not all medical professionals are like this. Praying for all of you. You two are wonderful parents.
Thank you. We had some wonderful nurses. Everything was done very poorly in Sophia's situation, and it was very unfortunate. I hope that they learned from what happened. I still actually go to the ob that ended up delivering sophia, and she is amazing. She still delivers at that hospital still, and I know Sophia made an impact on her.
I'm a pediatric specialist and completely agree.
I’m sitting here, in Fairfax VA, stunned by how you found out about Sophia’s diagnosis while pregnant & the birth of your baby... we have a daughter that was born at 30 weeks, and even now - she’s 19! - when you both said at the end of this video that Sophia’s birthday is not the story of joy and bliss - I can still tear up that our girl’s birth was scary and traumatic. People have no idea. BUT! I can’t wait to see more of your videos - I can’t wait to meet your little doll baby. And she’s 3 now!! You two as a couple experienced a miracle, and already it is VERY CLEAR to me that your Sophia is one lucky little girl. ❤️❤️❤️
Gisele M. Kusmik thank you!❤ it was definitely hard, but she is so strong, she showed us how to be that way too.
She is so blessed to have you as her mom and dad! Bless you for fighting for her!
I am just devastated by the treatment you & precious Sophia received at the hands of "professionals". Sending prayers & hugs to you all.
Your story is just riveting- what a harrowing birth / pregnancy story. What a fighter your daughter is and she has terrific parents, never being willing to give up despite all the negativity and hopelessness displayed during this time. Let’s hope that this treatment is the exception and not the rule when treating at risk babies. Not all infants are lucky enough to have parents that support their recovery despite the bleak prognosis given, but there will always be babies and people who defy the odds and prove medical professionals wrong. God bless your little family and may Sophia continue to thrive and be a living miracle.
Thank you for sharing your story.❤
I️ am livid listening how these nurses And Dr ‘s treated you
Daveda Lane it was hard for sure!
Daveda Lane me too it's disgraceful
a tip: watch series at flixzone. Been using them for watching a lot of movies these days.
Wow. Sophia really is a superhero...and so are you two!
Kristen Bostick thank you! Sophia is such a strong little lady.🙂
Wow! I am so sorry that you guys had to go through that! I cannot imagine it. ❤️
As a nurse I am so sorry that you both were treated that way! And I especially feel mortified that lil Sophia was treated that way! My prayers for you and your family and hopefully your story reaches and touches more people in the medical field so they can gain more compassion for the people they are serving! 💕💕
Crystal Seminole thank you❤ the vast majority of nurses of been fantastic over the years. I hope all of the doctors that have dealt with Sophia learned from this, and don't put another family through the same thing.
Sophia is so adorable! I enjoy watching your videos! I am taking care of a 30week preemie who is on a ventilator and has a tracheotomy and gtube. I know how hard it is to take care of such precious little ones! God Bless you!!
Crystal Seminole thank you! We are thankful for great nurses like you! We have had amazing nurses who really helped us through many of the dark times we had❤
Crystal Seminole Oh Crystal, what a horse’s ass you are! If you’re REALLY A NURSE, and I really doubt the validity of your assertions - you KNOW as well as I do how patient’s perceptions in stressful situations often are very skewed! Most often these patients, after the crises has passed apologize profusely for their words and behavior! YOUR APOLOGIES however, wring false - this is why your stated profession is fraudulent! Grow up Crystal!
Doctors and nurses enter their professions to ‘help people’ and are very concerned about caring for the patient and her family - often with no regard to their own needs like going to the bathroom before their bladder bursts, getting a bite of a sandwich before they pass out, standing at the bedside to comfort patients as their own feet are swollen and ache! NURSES are often expected to BE SUPER HEROES, and often times they are to the point of drop-dead fatigue only to turn around and come back the next dat OR after a few hours rest because ‘they’re short-staffed!
And yes, we like to listen to music for enjoyment HOWEVER, IN THIS SITUATION someone probably turned it on to try and lighten-up up the atmosphere for the staff, not meant to be heard by the parents.
I’m so, sorry sad that your daughter dies - sorry for you and her. I will say a prayer for you. I pray your heart heals swiftly and that perhaps you have more children.
NOW - from your remarks it sounds (thruyour own statements) that you saved up all of your complaints to catalogue them for this video - NO ONE COULD HAVE PLEASED YOU ORBE ENOUGH FOR YOU GUYS....by your admission you were ‘unkind thru words to your mother in law)!
I HAVE TO SAY IT - ‘she WAS DYING AND IT WAS THEIR(the staff’s fault’)
When you asked questions of the staff, WHY DIDNT YOU ASK FOR CLARIFICATION of their answers to your questions? You had so many family and friends with you - when that occurs, I, and my colleagues stand back - WAIT FOR YOU TO TELL US WHAT YOU NEED.
Sorry, all your family had to sit/sleep on the floor - it’s a hospital not a hotel! And how DARE YOU SAY ‘they didn’t care.’ I’m so angry at that statement - and you said ‘we said......’! HOW DARE YOU!?
No, we can’t help installing car seats..
.SIRRY - we have restrictions as well. Oh, and you’re angry with Hospice as well! WTF - did any one say anything right to you? I’m shutting this down. Rethink, re- work your remarks and statements!
Sorry you didn’t deliver a perfect baby in a perfect hospital with a perfect staff....I’m ABSOLUTELY CERTAIN YOU ARE ABSOLUTELY PERFECT IN THOUGHT AND DEED IN YOUR JOBS!
You two are amazing❤️❤️
NILMDto sleep is such a wonderful organization and provide a special service for grieving families 😢❤❤
I barely have any words for how sad I am at the way you and your family were treated during what was supposed to be the happiest moment of your life(and I am not saying it wasn't!!!) but was probably the scariest of moments of your life as well. I am in the middle of watching this video and am just feeling utter horror and shock. I am so sorry you went through any of that. Your daughter is a sweet little blessing.
Cori B thank you❤ it was definitely one of the scariest days of our lives. It was awful in so many ways, but Sophia is a pretty cool lady, and she's tough as nails!💪
Wow. What a travesty, the way the medical "professionals" treated your situation and your daughter! I want to apologize on behalf of those who really did your daughter wrong.
It's so so wrong, what they did, letting her oxygen go as low, and for so long. Unfortunately that alone could be the cause of most of her disabilities.
I can't imagine how traumatizing that experience was for you...but look where you are now?!
SellyNue thank you. We fully think that her being physically behind, was a combo of oxygen deprivation, and malnutrition from the months that doctors refused to help her. She actually rolled over at 2 1/2 months old. She was ahead of most "normal" babies for a while. But Sophia is very smart and really tough. And despite what wasn't done for her, she still fights for what she wants🙂
I love you guys so much!
charity we love you too!!
I hope all them doctors and nurses regret what they did...I’m glad she’s with you guys today she’s so adorable
Starla kendall thank you! We're so lucky to be her parents🙂
I am so sorry that u both and Sophia were treated like that
I don't know how you kept your cool because I'm not sure i would have been able to control myself. Those so called drs should have lost the license the way that they treated you guys and little Sophia. Just found the channel and it's August of 2018 so now I'm going to binge watch all of your videos to see how Sophia is doing now. No one should be treated the way you guys were treated. It's almost like their compassion went out the window and their bedside manner is horrible. It blows my mind that some people are so rude especially when you're going through something as emotional as this. But there's morons have to live with themselves. God bless you and your family
❤ thank you. The medical world is complicated, so unfortunately, even the worst doctors we've encountered aren't at risk for losing their license. But we've learned a lot, and we've forced them to learn too. Sophia is a pretty cool little lady😉
Drs and nurses were asses to u. My daughter was born 3lbs and 15 oz so I totally understand ur reaction of how small she was. They should of helped u!
They should have, unfortunately, her diagnosis was something that hindered a lot for her. We still have some doctors to this day who see trisomy 18, before they see Sophia.
I know a girl had a baby with several conditions and a preemie. She stopped breathing and the dr tried to refuse to resuscitate. This woman insisted they try to save her and they did and that little girl has survived. Moms know what's right
God gave you all a beautiful miracle.
Now I lay me down to sleep is such a wonderful group of people.
This is terrible! I’m so sorry that all happened to you, but I really hope it teaches others that you really have to do your research on hospitals when you have a child, especially when there is a situation like this. No one should ever have to go through that, and no child, no matter their condition, should ever be neglected and ultimately tortured by people that should be doing all they can for her. People like that do not deserve to work in medicine. That is beyond ridiculous.
❤
What a despicable way to be treated, I’m so sorry you both and little Sophia had to go through all that. I am glad she’s still with you despite everything she was put through, how dare the medical staff treat a little baby like that.
Thank you! It was a very difficult first year, but she is very strong. We are so lucky to have her❤
Omgsh I'm so sorry you guys were treated like that. She's beautiful 😍 And you guys are so strong!
thara21 thank you!❤
This is horrible that they treated you like this. If you could share about the period when you finally got help for her?
nadine bowden we definitely plan on sharing that story! It has been a long journey❤
I have had four babies two of them twins and each time they checked the car seats.
What kind of hospital is this
This was a local hospital. Unfortunately, with this diagnosis, this kind of thing happens a lot.
@@doseofdicamillo1811 awww I'm so sorry it just sounded like you were mistreated by the staff and over stelling
What a cruel comment about the c-section 😢 I am so sorry that was said to you 😢 🤗🤗
When my twin daughter who is now 17 almost died at two weeks and they told me to take her home. I threatened the doctors life so he sent her 10 mins down the road to a children's hospital and the doctor said they would do everything they could. Two weeks and 3 days later she was sent home and she happy healthy cross country runner for her high school top of her class right beside her twin brother who is in marching band
Unfortunately, our childrens hospital is about 4 hours away from where we had her. I'm glad your daughter is doing well!
would have been better for you to have kinder understanding care and support. thank you for sharihg💘💕
When was she born. I had a little girl w t 18. She didnt make it
❤I'm so sorry for your loss mama....
Sophia was born September 26th 2014
I am very angry that you guys and your baby was treated with such disrespect by the hospital you had her at! I hope once all of this was addressed once you had healed, because NO ONE deserves to be told that resources shouldn’t be used for a baby they cannot know for sure won’t make it. That’s is absurd!! I e watched dozens of videos of this similar circumstance and the staff are usually amazing at assisting families and sick babies. To just give up and not help her is cruel and unusual punishment and shouldn’t go without accountability.
I see there’s many other videos with her so I’m praying she has made
It and is doing ok. Prayers to you
OMG!!! At a loss for words at the uncaring and degrading way you were treated.
Oh, gosh....I just can believe the way you were treated by the staff at that hospital. Please don't go there again. Totally inhumane.
How horrible what the doctors and nurses put you guys thew so heartbreaking 😞
Starla kendall it was awful. But Sophia is a tough lady, and she pushed through, despite what they said or did.❤💪
God I pray you guys get/got a good attorney because that was horrific , doctor's take an oath and they broke that oath in EVERY way , praise to you both and to your precious baby
melissa rodriguez we would have a hard time suing unfortunately. Doctors are protected by the futility laws in this country...
The Dicamillo's isn’t that considers malpractice what they did refusal to care for a patient ?
Starla kendall unfortunately it's not...Doctors can refuse anything to a patient if they deem it "futile". If they name a diagnosis, and say that any treatment (including food or oxygen), will not help, they can withhold it. They can also place do not resuscitate orders on any patient without their knowledge or consent... that will be another story we will have to share!
Your story is truly touching and those doctors should be ashamed I don't understand why you would not at least try to help a baby in less it would cause more pain but to try to feed them or keep there oxygen levels up to not cause more damage its simple it should be done .I'm gald to see you have had the with your baby and may u have many mor ehappy memoires with her and any resource given to her is a resource worth as they said wasting as its for a perfect child someone's baby I do have a couple questions how old was she when she got a feeding tube? :is she able to hear or see? Do you plan on growing your family or has this both blessing or scary birthing experience made you be content with your princess only ? Please keep loving her and do what your heart tells you as your mommy and daddy you know better then anyone even doctors look how many times modern medicine has been proven wrong and sophia has proven that with every day and minute she blesses this world with her beautiful soul and presence I'm sure what people seen in the delivery room was her angels watching over her and they will always be there to watch over her mom and dad as well .Keep showing and sharing so parents don't get pressured into a choice they don't have to make out of fear or being first time parents like u were treated as if u didnt know because u didnt but now u do and others can learn from your and Sophia's amazing story ! Shine on princess You are so loved I can see it in your mommy and daddy's faces as they speak of you !
shandi mccadden I'm sorry I didn't see this comment until now!
Thank you. She got her feeding tube at 5 months old. Yes her hearing and vision are fine. Doctors have been surprised at how well she has done, and how "normal" She appears to be. The biggest struggle she has (aside from her heart condition) is low muscle tone. She is behind on her physical milestones because of this, but it doesn't stop her determination!
you were treated so badlyby the staffthey should of been more caringgod bless you both x
My heart goes out to you guys.The callous treatment you and Sophia endured by these so-called medical professionals is shameless.I hope you sued the crap out of them.
Holly Lynn thank you❤
Unfortunately, doctors are protected through futility laws, and it would be extremely difficult to get anywhere with a lawsuit.
That's sad.She has just as much right to medical help as anyone else.She's adorable btw.
Holly Lynn thank you! We definitely agree. We are currently involved with Simon's law. A mom of a trisomy baby created the law, so parents would at the very least have a seat at the table when it comes to decisions about their children's care.
And thank you again! We definitely think she's a cutie😉
You're very welcome.She's got a ton of personality in that little body of hers.
Holly Lynn she definitely does!
I am so sorry for the way you and Sophia were treated! It makes me so very angry! This is inexcusable! I don’t believe in suing people but I hope you sued them all for this unprofessional and inadequate care!
I cannot believe they didn’t give her supportive care! Why? Why didn’t they feed her? This is horrendous to me.
kaliekisses unfortunately, with her trisomy diagnosis it is common. Doctors are allowed to withhold care they feel is "futile"...
The Dicamillo's gosh that makes me sick. Is it really the doctors decision whether or not someone lives or dies? Isn’t that up to god? I can’t believe they could let a baby who’s breathing starve. Makes me so angry. I’m so glad she has you as her parents, you fought for her!
If the doctors were gonna do that then they shouldn’t be doctors.... doctors are supposed to help people and from the sounds of what u said they did kinda makes me mad cause my mom and biological dad went through the same thing but they don’t know how or why my oldest brother passed away....... the doctors just watched him die..... she was supposed to do a C-Section but they didn’t they made her give regular birth to a dead baby........ they sued the hospital but the hospital backed out or whatever so yeah...... it was rough especially for them because of how young they were...... she was 18 and my dad was 21
I'm so sorry... it happens more often than people realize, unfortunately. If doctors feel that ANY intervention is "futile" they can refuse it. It's truly terrible for many families.
Wow they are so disrespectful. I would’ve lost it.
Too long of a story to tell but if I had listened to my doctor and if I had not educated myself about symptoms of being overdue when pregnant, he would have aborted my son 3 months early. It’s absolutely ridiculous what that hospital put you through. So sorry you went through all that! She is so cute!!
Dixie Hull thank you! It's hard to believe some of the things that can happen in the medical world!
Dixie Hull and I am also so sorry that you went through that!
Wow that's shocking how you were treated disgusting
how awful as nursing professionals to not want to treat your baby..shes a human being..i would have gone ballistic..i hope you guys sued
Newbies don't know what 'going to Denver' means! I'm guessing you're in a suburb? Female doctors are usually easier to deal with, no? Sounds like you'd end up with a C-section anyway. I was a doula & I must say you had some terrible doctors! 119 babies & I have never encountered medical personnel like you had. So, they with held basic care from her? 2mos old? This baby survived? OMG! Nurses are not allowed to help doomed babies? They were TRAINED to discourage feeding a struggling baby. Damn, things have changed some for good (technology) & some for ill (they know so much now they used to be surprised) I have to see Sophia now ! Glad for you both.
We live on the "western slope", about 5 1/2 hours away from Denver. It's a big trip😉 my original ob was a woman, but in this particular office, when you're pregnant, you rotate through all of the providers. And we somehow ended up with just this guy. He was awful. Trisomy 18 is treated much different than any other child born with a medical condition. It's truly a terrifying thing to experience. But yes, she survived! And she turned 4 this past Wednesday!💪💪
Not sure but it sounds as if your Daughter survived. I know in The Good Old US of A you need medical insurance, did you have any? So glad I live in the UK. I have watched Trisomy 18 stories before, but have never seen anything so barbaric as yours.
We definitely had and have insurance. Sophia did survive. She just turned 4. We have a lot of issues here with medical care, unfortunately.
It's kind of hard to believe that the medical system treated you and Sofia so poorly......... well I don't want to believe it, because it's so wrong. That story about the Tylenol made me so mad. Anyone working in a labor and delivery unit would know not to do that, obviously she meant to do it and for it to do to Sofia what it did. Maybe that sort of treatment is why there are so few of these kids that do survive. if they are not aborted at the specialists recommendation, long before birth. These kids are not necessarily incompatible with life at all. Maybe more would survive with better treatment pre and post birth. Any way their tactics didn't work, good for you Sofia.
Thats exactly why they are kind of a self fulfilling prophecy. They say our kids won't survive, therefore they treat our kids as if they are dying, they withhold care, and our kids don't survive. Its tragic really. And these things happen to a lot of kids. I wish that it didn't.
Knock it off - criticizing the nurses and doctors! Remarks made by the parents - so upset - about staff behavior is highly circumspect - staff working in a perinatal unit are the most CARING PEOPLE in the world! NONE OF YOU COMMENTATORS WERE THERE, MOM WAS ON NARVOTICS AFTER C-section and Dad really did not know what was happening!
Kathryn Drury ok wow...first off, we had plenty of family and staff to verify what happened. Second, were you there? I find it odd that you are so quick to assume that this was just some narcotic induced story, and that what we said happened, didn't occur. I wish that what we said didn't happen. No one wants this to be their birth story. We stated clearly, that the majority of the nurses we had were amazing. And that the doctor that delivered her was great too. Just because they were great, it doesn't take away the ones that weren't. And our daughter suffered for it. The truth isn't nice, but we certainly aren't assuming that these things happened.
Kathryn Drury you sound like a very miserable person. I feel bad for anyone who knows you in real life.
Were you there?!? How can you possibly know how the staff behaved. Nurses and doctors are like any other profession - there are good and bad. I can assure you, though, that I certainly am grateful to have had my son at Saint Barnabas in Livingston, N.J., a teaching hospital.
@@doseofdicamillo1811 I’m really sorry for the disgraceful way you were treated, but so happy your daughter made it.