Our baby girl died in our arms in March. She lived for 36 hours and once we decided on palliative care instead of treatment things got a lot less scary and a lot more loving. The nurses, midwives, consultants and support workers who looked after us all were absolutely beautiful. The way they loved on her like she was one of their own is something I will never forget. They are the reason I'm going back to education to hopefully become a midwife now. 💞
I'm a nurse and worked in labor and delivery. There were times when I worked in NICU and cared for tiny babies. Some babies were sick, some needed to gain weight and others were going to die. One night I cared for a baby boy who was born with multiple severe genetic defects and was slowly dying. I held him and fed him and just loved him. His family didn't visit, I guess they had already mourned his death. So the nurses became his family. He had clubbed feet and die ears and kidneys that were deformed and barely functioning. I told him as I held him, that we're going to love you until you die. It was very hard!!!
I used to nurse palliative and aged care (now retired). I too sat with those who were dying. Someone has to love those poor souls who have no one. We make difference you know.
God Bless you Marilyn, it's sounds like you helped and loved unconditionally, and sometimes that's the best we can do. My Prayers are with you and all the family's that are blessed to have you walking with them every step of the way. 💜💜
This is beautiful and breaking my heart. My water broke at 26 weeks. Spent 6 months in the NICU, came home with feeding tube, oxygen, trached with a ventilator. It was the loneliest, hardest, longest years of my life. But he lived. He was off everything and trach closed at age 2. He is a brilliant funny creative healthy miracle today at 12 years old. I watched families who did not get to bring their babies home. Every day. We got to know each other, grandparents, siblings. We rejoiced together. We cried together. This brought so many powerful emotions flooding back to me.... And I feel selfish somehow because my story had a happier ending. God bless you, families and staff.
I wished this program was around for my Mum. Her baby was stillborn in 1952 (approx). She grieved all her life for that baby and blamed herself. She never got to see the baby or hold her. Or have a funeral she was dumped in a common grave with similar babies like she never existed. My mum’s heart broke, literally. She was never the same even though she had me and my bro later. She blamed herself. It wasn’t until I was about 42 and was finishing a midwifery section no of nursing did I realise how her baby died. It was placenta previa where the placenta covers the cervix and gets peeled away as the cervix opens and stops the supply of blood and oxygen to her baby. Now why didn’t they tell her that? She wasn’t a stupid woman. She live her whole life blaming herself when the reality is NOTHING except a modern c section could have saved her BEFORE labour commenced. In those days there was no ultrasounds to know where the placenta was. There were no treasures, no keepsakes just Dad telling her to go back to work in 2 weeks like a life lost never existed. I’m glad no one had to suffer like Mum because tragedies do happen sometimes. And no one should go through 50 years of blaming them self for the loss of their baby. Mum was happy after I told her but she died soon after. I still think it gave her some peace to know what happened and how. And why. THANKYOU doctors and nurses of nicu palliative care.
It was the same with my grandmother, she had 3 babies who were born and didn't live long, her first baby was born with the intestines on the outside, she lived 3 days the doctor wrapped her up and chucked her on the bed and told my grandmother to leave it. 2nd baby still born and 3rd baby lived couple of hours. Although my grandmother went on to have healthy children she never forgot her 1st borns and she carried the guilt it was her fault and the babies were taken away. I can't imagine the pain your mum went through but she was able to have peace knowing what happened to her baby wasn't her fault. 2005 I had a beautiful baby girl born very poorly and she died in my arms with dignity and I had amazing care. Bless you stand proud beautiful lady 💙❤️
@@ksanurse I am so glad that your mum passed with peace in her heart. There are no words to describe how callous hospitals were back in the dark ages of medicine. I'm actually curious if women that birthed at home had better support when dealing w/ a still born or baby that died soon after? I hope so.
Nomo at least the Mumma and daddy got to say goodbye to baby. Did anyone get investigated at the hospital for botching the delivery? The baby was someone. Somebody should pay.
You are amazing. You have been inspired by your Mom’s experience to make things easier for other parents. I’ve lost several chiltern in-utero. God bless you. God bless you! You’re doing God’s work. Thank you❤️ Your mom would be so proud of you ❤️ I’m so proud of you! You’re making a difference, sweetheart. God love you! ❤️
With my oldest grand, 1lb 1oz, convincing my daughter to allow her to go...was so extremely difficult. However, it meant that she got to hold her baby, alive...and bathe her and kiss her and love ON her...all things she could not do, while our sweet Amanda was in the NICU isolate. Her precious body had simply been through too much during her 13 days on earth. Embracing death changed everything for us. Hugs to everyone.
Anyone that works in palliative care is an angel on Earth. It's such a difficult and delicate task, I have nothing but respect for those that help guide families through the dying process.
Wow, this presentation is so beautiful. I made the very hard decision to pull life support off of my baby in 1998; my experience was completely different from the way this NICU handles these very fragile babies and their families. I am so happy that medicine has changed in this area.
My son died in my arms in the John Hopkins children center and the nurses and doctors were wonderful with his care he had serious lung problems born at 23 weeks lived 4mos 03-30-16 to 08-12-16 Rest in peace Amaari Amar brown I miss u so much
Amazing! I'm so thankful for John Hopkin's and NICU for taking care of me for 4 moths when I was a baby. They saved my life and thanks to them I can happily say, I am alive. Soon-to-be 17 years ago on June 5th I was born of 5 moths and taken care of at John Hopkin's NICU... They helped my parents and the doctors were amazing... I can't be thankful enough for John Hopkins for the gift of life. Thank you NICU!!!
This is an incredibly beautiful presentation of what must be one of the excruciatingly pain-filled and sorrowful experiences in a couple's life. It presents with such clarity and tenderness all the people involved, starting with the parents and going through every person in this amazing palliative care team at Johns Hopkins NiCU. I teach about how to make friends with death with adults--usually older adults--to help them accept, honor and embrace their mortality. But this--this fine video brings to us to this whole other end of the spectrum--accepting and even embracing the end of a brand-new child's life. Thank you, Johns Hopkins, and may all of you as well as the parents on this video be models for people in neonatal medicine everywhere. You are all a great blessing.
I would need to hold my baby too. This is amazingly. Forty five years ago, doctors told parents NOT to see the preemie Really, a baby born too soon & not breathing was taken from the parents & doctors refused to let them see or hold their child, telling them they would recover "sooner & more easily". What a huge mistake.
Hell, they didn’t even let you visit your child in the hospital. I was born in 1956, and got an accidental burn on my back as an infant (put on a hot water bottle to warm, thin spot of padding was not noticed). I had to have “revision” surgeries to split the scar for me to grow until I was 12 and they grafted it.
I am humbled by the brave, amazing parents in this video. These babies are so beautiful ❤️ I am sending love and positivity to these families - they are beyond inspirational.
Im so happy these babies were able to experience the love of their mothers and fathers even for a brief moment. These families chose life despite the terminal diagnosis and gave these children exactly what they deserved....being able to lay in the arms of their mothers and fathers even just once and know love. So bittersweet. So much to learn from this.
I was a scared 16yr old with a baby who wouldn’t love to see her first birthday I had no one advocate for me as her mother . I wanted to hold her one last time alive with the tubes but was not given that , I wanted to be alone with her but was not offered that . Alex would had been 26 this past June .
My son Daniel lived for 7 hours and I never got to hold him,but the nurses wheeled me over so that I could touch his hand..ill never forget that feeling. 1989-14-11 Passed on 1989 the 15th. Then in 1990,his brother Jeffrey passed away while in my womb,I got to hold him..my hearts still 💔 The worst part of was when my husband then called me a murderer..
You don't need a man that behaves like that I hope you dumped him he's a narcissistic and I wouldn't give them the ground I walked on never get with another narcissist I know 3 people who are narcissistic and have no empathy to anyone other than there click group I wouldn't want anyone to be treated by narcastists like I have and have trouble apart from family friends my mental health team but people who are living where you're living well
I have always wanted to work within the NICU, I was worried because I am a loving person and thought I'd have to detach myself. This video has shown me that my love needs to grow tenfold for these people!
These poor poor people ....losing a child is the WORST thing that can happen to anyone. What a wonderful team...blessings to the team that help them through..what a great idea the photography and hand prints are.
I couldn't do their job. It takes a certain level of compassion, gentleness, and patience. Bless the hospital staff and parents. You guys are awesome. ♥️♥️
These are among the best folks on earth. Even if a life is short, it can be full of love. Thanks to the families for sharing their stories. Positive vibes from New Hampshire and remember to be kind to each other and yourself during this pandemic and social crisis
I am praying for you families and remember you guys are very strong people I am so sorry for your losses I know you guys can get through this because you are very strong and brave families remember god is with you now and forever I love how you guys had the courage to deal with this in a VERY VERY POSITIVE WAY GOD BLESS YOU AND FAMILY keep being strong I know it's hard to lose children at such a young age but at least you got to be with your babies and hold them before the hard decision to make I'm supporting you and all the families that have to go through this I hope there will be cures,treatments and previtive measures to stop families to go through this but god said it was for them to be angles love you guys
It takes a village to raise a child, it should take a village to get through the loss of a child. I almost lost my teenage grandson and it was an entire team that got us through it, from the PICU Drs and nurses to the Child Life specialist and chaplain. They answered every single question and if we didn't understand, they kept on explaining until we did. The chaplains prayed with us every day, the social worker was arranging rooms at the McDonald's house. Medicine should be a team job and it shouldn't be only at Children's hospitals but every hospital. Helping these families through the most difficult thing they'll probably ever go through is a hard job. I'm so grateful for the medical professionals who decide this is how they're going to practice medicine. There should be as much dignity and grace in dying as there is in living. The babies and their families deserve to have both, even if it's for a moment
All parents who are facing losing a baby should be treated like this, it’s so sad that’s not the case. I was a lucky one. My baby had purpose. These professionals are angels on Earth.
I am so glad things have changed.... I was just left alone.. They took my daughter away in minutes.. I never got to hold her alive.. I got a 10 minutes hold the next day and that was it.. A couple of pictures
I worked as a hospice nurse for over 20 years, but didn't ever have the chance to work with anyone under the age of 20 yrs. After watching this video I wish I had taken the steps to do so but I'm grateful for the family that allowed me to help them through this journey. From their kids to the grandkids and sometimes great grandchildren I was blessed to be with them all. 💜💜
My granddaughter died last year of an overdose. Afterwards my “friends” almost refused to even acknowledge that she had ever even existed. One of them told me to stop “whining” the day after she died. The absence of care from everyone but my husband and son made my grief so much worse. I’m still trying to make my way out of the darkness of her absence even a little.
So very sorry for the tragic loss of your beloved grandaughter. I have one granddaughter whom I love more than she will ever know, I can't even imagine what my life would be like without her in it. My sincerest condolences. God bless you.
@@YeshuaKingMessiah honestly? No…..people just want to take and take….after a lifetime of giving endlessly the only person who I can truly call my friend is my husband.
The Hopkins NICU is an incredible place that's filled with joy and sorrow. I realized how lucky I was to have strong, huge babies compared with rest of the patients. Even though my little guys had complications and were born early (almost 32 weeks weighing just about 3 lbs each), I saw preemies who had just gained enough to be 1 lb. I saw the staff be joyous whenever babies graduated to the regular unit or to home, and these same people cried with the parents of the sickest and dying babies. They are very special people indeed.
You are watching this because you are emotionally brave and ready to acknowledge the tiny thread that our life hangs. Then you truly can embrace your own life in joy knowing we are perishable fruit. It is the limits that makes so precious. Wisdom from an old palliative nurse.
I remember years ago I wished for something like this when I lost my twin daughters. I so wish I could have held them until they died. That was years ago and they didn't talk about that kind of stuff with moms and that makes the grieving very hard. I agree about false hopes because that's what I thought at the time.
There is nothing more important to someone's life than being able to make them comfortable and leave their loved ones with peace and dignity, whatever age they be. It is a selfish decision to not let them go, we're keeping them here for us. My mum had been on a respirator for 10 days, she was fully functional, knew what was happening, knew she couldn't breathe on her own. My mum would never have forgiven my dad or me if we let her just lay there and loose her dignity. We were able to say goodbye to my mum, she wrote on a pad that she loved us and she said thank you. In my humble opinion this is the most caring thing you can do for someone you love.
My daughter has type 1 Gauchers disease, she has been receiving treatment for her Gauchers disease since she was diagnosed at 3. I had been told she was born when the meds we're getting better. I am sorry you lost your babies, I feel so blessed to have my daughter, it has been 15 years.
Thank you everybody for sharing. I also had a still birth at 23 1⁄2 weeks and the baby looked normally on the outside and it was very hard and I didn't understand then when they said I could have the baby for a couple of days and as long as I needed to but I understand years later what that meant it was a part of a grieving process But it was scary than and it's still scary now thank you to all the people in this film I really appreciate and god bless Anyone and everyone that's had to go through something anything at all Is heartbreaking heartbreaking !!🎉I guess the best thing to do is celebrate life and death!!. God bless everyone
What huge, painful decisions parents are faced with making at a time they'd thought would be a time of joy. The people who've committed themselves to providing emotional support, compassion, guidance in dealing with such difficult decisions must be very special people.
Letting go of your child is the hardest thing a parent has to do, no matter what their age or circumstance. I am unsure which is more difficult to bear...the what was or what could have been.
I can't even imagine losing a child. This has gotta be one of the hardest things a person could possibly go through. Part of the reason I don't plan on biological children is because I run a higher risk of miscarriage or stillbirth due to my PCOS. At least I KNOW that I run that risk and can shape my plans in accordance with that, but these parents had no idea of what was coming, and that's gotta be the hardest part. You're perfectly healthy, your pregnancy seems perfectly normal, when all of a sudden you get the worst news a parent could possibly get. These parents are so incredibly strong for pushing through despite their losses. I'm not sure if I could ever be that strong.
Watching this made me feel very sad but also glad....which probably sounds weird.....I was sad for all the families in this programme but glad for the love and attention they received from all the staff involved....helping the families to embrace the sorrow and heartbeak these families were going through..while also being honest and truthful about the inevitable outcome....
God bless the people who do this work... I couldn't, my heart couldn't take it. These people are a true blessing to all the babies & families they've cared for in such a heartbreaking time.
RIP sweet little ones, you were, are, and will always be loved. God bless you all...... parents, siblings, doctors, photographers and anyone else that help through these parents most difficult time.
I met both of these beautiful wonderful women the Chaplin n the social worker who are featured in this video ♥️🙏🏾😇😊 thank you all for your wonderful care for me and Amaari
Speaking from the heart of a nurse, there is nothing more humbling than witnessing a beautiful death... Palliative and hospice care is an amazing specialty. The Lord has truly blessed medical advisers who understand the process of death and dying and can talk openly about dying with patients and their families.
I made the hardest decision in my life to have my old dog put down. I can't even equate the thought of having to make the same decision for any of my kids. And the 1st person to bring up "god" I'd rip their throat out!
Palliative care isn’t the same thing. It’s simply providing medical comfort and allowing nature to take it’s course. Also, it is difficult to compare the death of one being to another. Love is love and you loved your dog, and vice versa. I have witnessed the deaths of two pets, and never a baby. But, yes. You love pets every bit as much.
Natural part of living is dying but we have been preconditioned that we are invincible, and we don't discuss dying as a normal part of the cycle of life.
I felt pressured every time Pallative Care came in to the nicu at children's Mercy in Kansas. I would have lost two weeks of my little man fighting to live had I listened to them the first day they came to talk to me. I'm glad they're helpful for some, but they were extremely uncomfortable for me when all I had was hope for my baby it hurt to see them have none. I didn't understand who they were at first.. I remember feeling angry as they left and asking if they were actual doctors .. 😑
Thank you for sharing this. I am glad i heard a negative experience with this type of care because sometimes i want to be a palliative care nurse but i would want to be very conscious of the parent’s feelings
I had a similar experience my son was born at 23 weeks, 1lbs 1oz. Had I not had a mind of my own he wouldn’t be here today. I think they feel as if the can’t live a full life you should let them go.
This is such a lovely program that helps people have more beautiful memories during such a dark time. This must help the grieving process for one of the hardest trials parents' life. I hope the champlain supports them if/when parents choose to terminate as well, especially it ifs late term. That can also be a loving, tragic decision.
My baby girl and I received palliative care after she was born with severe HLHS. It was such a confusing time and the worst thing to ever happen to me and my other children. They were so amazing and caring to my whole family, and made it all so stress free. We didn't have to ask for help with anything. They set everything up. Explained our options. ❤️
I personally think this is the most Stong handles underrated position. Trying to stay strong with out breaking down with the parents I know I couldn’t do it
Thank you all for sharing your love and stories all of you are truly good parents and l say you are because they will always be your babies even though they are gone
I found out I was pregnant when I lost a tiny girl only still developing I had to get out no scan I couldn't bear it. A few days later I felt unwell and went back to fo find out there was a tiny boy still fighting my emotions took over every emotion I could think of at once but her face changed while scanning with a thumping heart and that terror feeling I jumped up I told her stop wanted to run. I just knew. He wasn't going to live either along with him being very weak my placenta was too low. They said days but my son had other ideas. I felt him move even grew a small bump lucks held on for 2 more months. My placenta moved no need for surgery and I got 2 days wi5h my boy born sleeping but so perfect. I was besotted with his perfect teeny tiny hands. The twins would be 9 July 4th. They were my miracle as I was told I couldn't have children dew to chronic endometriosis.. love to everyone who goes through this and to my brother who's son was born sleeping and to my step sister Michelle now in heaven herself with her 2 sons b9rn sleeping. Now all our little ones play in the sky's together 😇😇😇😇😇
My baby has been diagnosed with ABS in the abdominal wall causing severe scoliosis and grastroschesis they say she is not compatible with life my wife is at 25 weeks at 37 weeks we are going through her birth Ruby I love so much please
John Hopkins Hospital is the best ever, they saved my son's life along with the University Hospital my son was born with Cystic Fibrosis his father had the gene and so did I. But i could make this a book but won't, you all just need to know they are the best hospital in the world. If they can be fixed they will be, and if not, they will try like anything to get other specialists to come in to compare, to what they might be missing, more than likely he will leave there with eyes wide open and above all many prayers, God needs to be in it as well❤
I can't it's a wonderful program put my boyfriend was put on palliative care in March of 2023 and we could not get an appointment for him until July of 2023 so you passed away in our bed. With no support but me
I'm a nurse and worked in labor and delivery. There were times when I worked in NICU and cared for tiny babies. Some babies were sick, some needed to gain weight and others were going to die. One night I cared for a baby boy who was born with multiple severe genetic defects and was slowly dying. I held him and fed him and just loved him. His family didn't visit, I guess they had already mourned his death. So the nurses became his family. He had clubbed feet and die ears and kidneys that were deformed and barely functioning. I told him as I held him, that we're going to love you until you die. It was very hard!!!
My best friend lost her baby at 24 wks back in 03. She left her husband because in her mind it was his fault their daughter died. She didn't talk to me for almost 3 years because my daughter was alive. Her new husband doesn't allow her to talk about the baby because that was her past.
c harrington I truly hope the two of you have found a way to move forward as friends, and that your friend has found healing and strength. Sounds like she has a true friend in you. God bless, and have a healthy and happy new year! Best wishes from Ontario Canada 🇨🇦. ✨💐✨🙂
That Chaplain is so wonderful... they all are. The Chaplain said something so powerful. After they leave the hospital 7 move forward it's so great to have someone to remember their experience with them. It's like it matters & it's important. Love what she said about that. 💙🙏😇
I produced the video. I did not produce the subtitles. I don't know where they are coming from. I will look into this. Thank you for bringing this to my attention.
They aren't in pain. They are just tiny. Give them soon and chest contact with the healthy parent. Cutie. Your live makes them grow. Smile! Happy Monday! 👍🙂👶
Our baby girl died in our arms in March. She lived for 36 hours and once we decided on palliative care instead of treatment things got a lot less scary and a lot more loving. The nurses, midwives, consultants and support workers who looked after us all were absolutely beautiful. The way they loved on her like she was one of their own is something I will never forget. They are the reason I'm going back to education to hopefully become a midwife now. 💞
💙❤️
So happy you got to say good bye.. forever your 😇 baby. Hope your doing well best of luck and love to carry you in your new career
@@othersbyuri She really is our darling 🧚🏻♀️ and thank you so much for the well wishes xxxx
@Nomo lots of love to you too💞 Something to look forward to has definitely been a positive xxx
❤️🌈🌹😍
I'm a nurse and worked in labor and delivery. There were times when I worked in NICU and cared for tiny babies. Some babies were sick, some needed to gain weight and others were going to die. One night I cared for a baby boy who was born with multiple severe genetic defects and was slowly dying. I held him and fed him and just loved him. His family didn't visit, I guess they had already mourned his death. So the nurses became his family. He had clubbed feet and die ears and kidneys that were deformed and barely functioning. I told him as I held him, that we're going to love you until you die. It was very hard!!!
You did the right thing for that little guy.
❤😔
I used to nurse palliative and aged care (now retired). I too sat with those who were dying. Someone has to love those poor souls who have no one. We make difference you know.
Thank you 🙏 Your a beautiful Angel 👼
God Bless you Marilyn, it's sounds like you helped and loved unconditionally, and sometimes that's the best we can do.
My Prayers are with you and all the family's that are blessed to have you walking with them every step of the way.
💜💜
This is beautiful and breaking my heart. My water broke at 26 weeks. Spent 6 months in the NICU, came home with feeding tube, oxygen, trached with a ventilator. It was the loneliest, hardest, longest years of my life. But he lived. He was off everything and trach closed at age 2. He is a brilliant funny creative healthy miracle today at 12 years old. I watched families who did not get to bring their babies home. Every day. We got to know each other, grandparents, siblings. We rejoiced together. We cried together. This brought so many powerful emotions flooding back to me.... And I feel selfish somehow because my story had a happier ending. God bless you, families and staff.
Don’t feel guilty. Your son was a miracle. Cherish each moment and still continue to provide comfort and support to bereaved parents.
I wished this program was around for my Mum. Her baby was stillborn in 1952 (approx). She grieved all her life for that baby and blamed herself. She never got to see the baby or hold her. Or have a funeral she was dumped in a common grave with similar babies like she never existed. My mum’s heart broke, literally. She was never the same even though she had me and my bro later. She blamed herself. It wasn’t until I was about 42 and was finishing a midwifery section no of nursing did I realise how her baby died. It was placenta previa where the placenta covers the cervix and gets peeled away as the cervix opens and stops the supply of blood and oxygen to her baby. Now why didn’t they tell her that? She wasn’t a stupid woman. She live her whole life blaming herself when the reality is NOTHING except a modern c section could have saved her BEFORE labour commenced. In those days there was no ultrasounds to know where the placenta was. There were no treasures, no keepsakes just Dad telling her to go back to work in 2 weeks like a life lost never existed. I’m glad no one had to suffer like Mum because tragedies do happen sometimes. And no one should go through 50 years of blaming them self for the loss of their baby. Mum was happy after I told her but she died soon after. I still think it gave her some peace to know what happened and how. And why. THANKYOU doctors and nurses of nicu palliative care.
It was the same with my grandmother, she had 3 babies who were born and didn't live long, her first baby was born with the intestines on the outside, she lived 3 days the doctor wrapped her up and chucked her on the bed and told my grandmother to leave it. 2nd baby still born and 3rd baby lived couple of hours. Although my grandmother went on to have healthy children she never forgot her 1st borns and she carried the guilt it was her fault and the babies were taken away. I can't imagine the pain your mum went through but she was able to have peace knowing what happened to her baby wasn't her fault. 2005 I had a beautiful baby girl born very poorly and she died in my arms with dignity and I had amazing care. Bless you stand proud beautiful lady 💙❤️
Cherry Perks oh THANKYOU so much. I think that peace was the greatest gift I gave to Mum.
@@ksanurse I am so glad that your mum passed with peace in her heart. There are no words to describe how callous hospitals were back in the dark ages of medicine. I'm actually curious if women that birthed at home had better support when dealing w/ a still born or baby that died soon after? I hope so.
Nomo at least the Mumma and daddy got to say goodbye to baby. Did anyone get investigated at the hospital for botching the delivery? The baby was someone. Somebody should pay.
You are amazing.
You have been inspired by your Mom’s experience to make things easier for other parents.
I’ve lost several chiltern in-utero. God bless you. God bless you!
You’re doing God’s work.
Thank you❤️
Your mom would be so proud of you ❤️ I’m so proud of you! You’re making a difference, sweetheart. God love you! ❤️
With my oldest grand, 1lb 1oz, convincing my daughter to allow her to go...was so extremely difficult. However, it meant that she got to hold her baby, alive...and bathe her and kiss her and love ON her...all things she could not do, while our sweet Amanda was in the NICU isolate. Her precious body had simply been through too much during her 13 days on earth. Embracing death changed everything for us.
Hugs to everyone.
Anyone that works in palliative care is an angel on Earth. It's such a difficult and delicate task, I have nothing but respect for those that help guide families through the dying process.
Turkeyinthehay It would certainly take a very special type of person to do that kind of work. God bless them. 💗💙
Kimberly Knott t
Wow, this presentation is so beautiful. I made the very hard decision to pull life support off of my baby in 1998; my experience was completely different from the way this NICU handles these very fragile babies and their families. I am so happy that medicine has changed in this area.
What was your experience? Would you mind sharing?
God Bless you. 😘
I’m sorry for your loss. 1998 was life changing for me too.
What an amazing model of palliative care! This should be replicated in all hospitals
My son died in my arms in the John Hopkins children center and the nurses and doctors were wonderful with his care he had serious lung problems born at 23 weeks lived 4mos
03-30-16 to 08-12-16
Rest in peace Amaari Amar brown
I miss u so much
The parents who understand quality may be better than miserable invasive quantity. I admire their courage to think of the baby first.
Amazing! I'm so thankful for John Hopkin's and NICU for taking care of me for 4 moths when I was a baby. They saved my life and thanks to them I can happily say, I am alive. Soon-to-be 17 years ago on June 5th I was born of 5 moths and taken care of at John Hopkin's NICU... They helped my parents and the doctors were amazing... I can't be thankful enough for John Hopkins for the gift of life. Thank you NICU!!!
Happy 17 th birthday 🥳 🎂 ! The world 🌎 is blessed to have you!!! So thankful!!! Have a wonderful week!!!
This is an incredibly beautiful presentation of what must be one of the excruciatingly pain-filled and sorrowful experiences in a couple's life. It presents with such clarity and tenderness all the people involved, starting with the parents and going through every person in this amazing palliative care team at Johns Hopkins NiCU. I teach about how to make friends with death with adults--usually older adults--to help them accept, honor and embrace their mortality. But this--this fine video brings to us to this whole other end of the spectrum--accepting and even embracing the end of a brand-new child's life. Thank you, Johns Hopkins, and may all of you as well as the parents on this video be models for people in neonatal medicine everywhere. You are all a great blessing.
I would need to hold my baby too. This is amazingly. Forty five years ago, doctors told parents NOT to see the preemie Really, a baby born too soon & not breathing was taken from the parents & doctors refused to let them see or hold their child, telling them they would recover "sooner & more easily". What a huge mistake.
Hell, they didn’t even let you visit your child in the hospital. I was born in 1956, and got an accidental burn on my back as an infant (put on a hot water bottle to warm, thin spot of padding was not noticed). I had to have “revision” surgeries to split the scar for me to grow until I was 12 and they grafted it.
I am humbled by the brave, amazing parents in this video. These babies are so beautiful ❤️ I am sending love and positivity to these families - they are beyond inspirational.
Im so happy these babies were able to experience the love of their mothers and fathers even for a brief moment. These families chose life despite the terminal diagnosis and gave these children exactly what they deserved....being able to lay in the arms of their mothers and fathers even just once and know love. So bittersweet. So much to learn from this.
Hopkins also does a yearly get-together/memorial meeting for all the NICU parents who lost their babies. It's a really amazing service they give them!
Thank you to all the families that shared a part of the hardest moment of their life...🙏🏼
This program is extremely important and has great value for many parents who are in this difficult situation.
I was a scared 16yr old with a baby who wouldn’t love to see her first birthday I had no one advocate for me as her mother . I wanted to hold her one last time alive with the tubes but was not given that , I wanted to be alone with her but was not offered that . Alex would had been 26 this past June .
My son Daniel lived for 7 hours and I never got to hold him,but the nurses wheeled me over so that I could touch his hand..ill never forget that feeling.
1989-14-11
Passed on 1989 the 15th.
Then in 1990,his brother Jeffrey passed away while in my womb,I got to hold him..my hearts still 💔
The worst part of was when my husband then called me a murderer..
You don't need a man that behaves like that I hope you dumped him he's a narcissistic and I wouldn't give them the ground I walked on never get with another narcissist I know 3 people who are narcissistic and have no empathy to anyone other than there click group I wouldn't want anyone to be treated by narcastists like I have and have trouble apart from family friends my mental health team but people who are living where you're living well
I have always wanted to work within the NICU, I was worried because I am a loving person and thought I'd have to detach myself. This video has shown me that my love needs to grow tenfold for these people!
there is no bigger pain then that of a loss of a child. Parents who continue to live after that are the strongest people in the world.
That’s true, losing your child is the worst nightmare one can face. After that everything else seems trivial.
These poor poor people ....losing a child is the WORST thing that can happen to anyone. What a wonderful team...blessings to the team that help them through..what a great idea the photography and hand prints are.
And this is why I’ll be working at hopkins in the spring. Love this hospital so much ❤️
I couldn't do their job. It takes a certain level of compassion, gentleness, and patience. Bless the hospital staff and parents. You guys are awesome. ♥️♥️
You forget incredible inner strength.
These are among the best folks on earth. Even if a life is short, it can be full of love. Thanks to the families for sharing their stories.
Positive vibes from New Hampshire and remember to be kind to each other and yourself during this pandemic and social crisis
I am praying for you families and remember you guys are very strong people I am so sorry for your losses I know you guys can get through this because you are very strong and brave families remember god is with you now and forever I love how you guys had the courage to deal with this in a VERY VERY POSITIVE WAY GOD BLESS YOU AND FAMILY keep being strong I know it's hard to lose children at such a young age but at least you got to be with your babies and hold them before the hard decision to make I'm supporting you and all the families that have to go through this I hope there will be cures,treatments and previtive measures to stop families to go through this but god said it was for them to be angles love you guys
It takes a village to raise a child, it should take a village to get through the loss of a child. I almost lost my teenage grandson and it was an entire team that got us through it, from the PICU Drs and nurses to the Child Life specialist and chaplain. They answered every single question and if we didn't understand, they kept on explaining until we did. The chaplains prayed with us every day, the social worker was arranging rooms at the McDonald's house. Medicine should be a team job and it shouldn't be only at Children's hospitals but every hospital. Helping these families through the most difficult thing they'll probably ever go through is a hard job. I'm so grateful for the medical professionals who decide this is how they're going to practice medicine. There should be as much dignity and grace in dying as there is in living. The babies and their families deserve to have both, even if it's for a moment
All parents who are facing losing a baby should be treated like this, it’s so sad that’s not the case. I was a lucky one. My baby had purpose. These professionals are angels on Earth.
I am so glad things have changed.... I was just left alone.. They took my daughter away in minutes.. I never got to hold her alive.. I got a 10 minutes hold the next day and that was it.. A couple of pictures
I’m sorry for your loss
@@adelaidemarie ❤️ thank you
I’m so sorry for your loss
@@brittasings ❤️
Trying to be heroic hurts us in the end
I worked as a hospice nurse for over 20 years, but didn't ever have the chance to work with anyone under the age of 20 yrs. After watching this video I wish I had taken the steps to do so but I'm grateful for the family that allowed me to help them through this journey. From their kids to the grandkids and sometimes great grandchildren I was blessed to be with them all.
💜💜
My granddaughter died last year of an overdose. Afterwards my “friends” almost refused to even acknowledge that she had ever even existed. One of them told me to stop “whining” the day after she died. The absence of care from everyone but my husband and son made my grief so much worse. I’m still trying to make my way out of the darkness of her absence even a little.
My heart goes out to you and so sorry for your loss xxx
@@serenacampbell6256 thank you so very much.
So very sorry for the tragic loss of your beloved grandaughter. I have one granddaughter whom I love more than she will ever know, I can't even imagine what my life would be like without her in it. My sincerest condolences. God bless you.
I hope you ve found n made some actual friends now
@@YeshuaKingMessiah honestly? No…..people just want to take and take….after a lifetime of giving endlessly the only person who I can truly call my friend is my husband.
The Hopkins NICU is an incredible place that's filled with joy and sorrow. I realized how lucky I was to have strong, huge babies compared with rest of the patients. Even though my little guys had complications and were born early (almost 32 weeks weighing just about 3 lbs each), I saw preemies who had just gained enough to be 1 lb. I saw the staff be joyous whenever babies graduated to the regular unit or to home, and these same people cried with the parents of the sickest and dying babies. They are very special people indeed.
Thank god the mothers got to spend time with there beautiful Angel's 👼👶👼👶🙏🙏💚
Why did I watch this? I am ugly crying. God bless all these people, all these families, and all these children.
MacKenzie Karsonovich I'm wondering the same thing. I am in no condition to watch this.😢
You are watching this because you are emotionally brave and ready to acknowledge the tiny thread that our life hangs. Then you truly can embrace your own life in joy knowing we are perishable fruit. It is the limits that makes so precious. Wisdom from an old palliative nurse.
I remember years ago I wished for something like this when I lost my twin daughters. I so wish I could have held them until they died. That was years ago and they didn't talk about that kind of stuff with moms and that makes the grieving very hard. I agree about false hopes because that's what I thought at the time.
There is nothing more important to someone's life than being able to make them comfortable and leave their loved ones with peace and dignity, whatever age they be. It is a selfish decision to not let them go, we're keeping them here for us.
My mum had been on a respirator for 10 days, she was fully functional, knew what was happening, knew she couldn't breathe on her own. My mum would never have forgiven my dad or me if we let her just lay there and loose her dignity. We were able to say goodbye to my mum, she wrote on a pad that she loved us and she said thank you. In my humble opinion this is the most caring thing you can do for someone you love.
I admire your decision and I’m thankful you shared your story 🙏
These experiences cut you to the core but I swear the angels show up and somehow you can feel it.
My daughter has type 1 Gauchers disease, she has been receiving treatment for her Gauchers disease since she was diagnosed at 3. I had been told she was born when the meds we're getting better. I am sorry you lost your babies, I feel so blessed to have my daughter, it has been 15 years.
Thank you everybody for sharing. I also had a still birth at 23 1⁄2 weeks and the baby looked normally on the outside and it was very hard and I didn't understand then when they said I could have the baby for a couple of days and as long as I needed to but I understand years later what that meant it was a part of a grieving process But it was scary than and it's still scary now thank you to all the people in this film I really appreciate and god bless Anyone and everyone that's had to go through something anything at all Is heartbreaking heartbreaking !!🎉I guess the best thing to do is celebrate life and death!!. God bless everyone
What huge, painful decisions parents are faced with making at a time they'd thought would be a time of joy.
The people who've committed themselves to providing emotional support, compassion, guidance in dealing with such difficult decisions must be very special people.
Cried for each and every one of these parents I cant imagine the pain.
To be the compassionate witness is the very best of humanity.
Makes me so sad I didn't have this kind of care when I lost my little girl, only 7 days old. One Polaroid that I can't even make out 😢
I’m sorry for your loss
I’m so sorry for your loss
I am so very sorry. Lost my son Jan 1995 and also have horrible Polaroids. Thankful things are changing.
Letting go of your child is the hardest thing a parent has to do, no matter what their age or circumstance. I am unsure which is more difficult to bear...the what was or what could have been.
These are wonderful. Because they were here. They were here. ❤️
That was the best moment for me was to hold him and he passed in my arms 🙏🏾😇😔😊🙏🏾🙏🏾🙏🏾🙏🏾 I know I did the right thing
I respect these Drs and nurses, i do end of life care for the elderly!!
I can't even imagine losing a child. This has gotta be one of the hardest things a person could possibly go through. Part of the reason I don't plan on biological children is because I run a higher risk of miscarriage or stillbirth due to my PCOS. At least I KNOW that I run that risk and can shape my plans in accordance with that, but these parents had no idea of what was coming, and that's gotta be the hardest part. You're perfectly healthy, your pregnancy seems perfectly normal, when all of a sudden you get the worst news a parent could possibly get. These parents are so incredibly strong for pushing through despite their losses. I'm not sure if I could ever be that strong.
This is such a beautiful model, 30 years ago my brothers weren't allowed in the nicu when I was born.
On a positive note, my niece is a Child Life Specialist @Riley Children's Hospital Indianapolis IN where my daughter passed away 30 years ago.
Watching this made me feel very sad but also glad....which probably sounds weird.....I was sad for all the families in this programme but glad for the love and attention they received from all the staff involved....helping the families to embrace the sorrow and heartbeak these families were going through..while also being honest and truthful about the inevitable outcome....
my daughters name is Lavender
God bless the people who do this work... I couldn't, my heart couldn't take it. These people are a true blessing to all the babies & families they've cared for in such a heartbreaking time.
RIP sweet little ones, you were, are, and will always be loved. God bless you all...... parents, siblings, doctors, photographers and anyone else that help through these parents most difficult time.
I met both of these beautiful wonderful women the Chaplin n the social worker who are featured in this video ♥️🙏🏾😇😊 thank you all for your wonderful care for me and Amaari
That's what had to do it is the hardest thing I had to ever do in my life was to disconnect the life support
Praise God for these wonderful angels who are truly making peoples lives a little better. I would be useless, all I feel I could do is 😭
Wow. Absolutely incredible
Speaking from the heart of a nurse, there is nothing more humbling than witnessing a beautiful death... Palliative and hospice care is an amazing specialty. The Lord has truly blessed medical advisers who understand the process of death and dying and can talk openly about dying with patients and their families.
Lindo trabalho desses profissionais!!
Eu não conseguiria lidar com isso.
If anything we should all hug our children a little tighter today.
I made the hardest decision in my life to have my old dog put down. I can't even equate the thought of having to make the same decision for any of my kids. And the 1st person to bring up "god" I'd rip their throat out!
hallets1956 why!!!!!
How about a god damn it?
Palliative care isn’t the same thing. It’s simply providing medical comfort and allowing nature to take it’s course.
Also, it is difficult to compare the death of one being to another. Love is love and you loved your dog, and vice versa.
I have witnessed the deaths of two pets, and never a baby. But, yes. You love pets every bit as much.
Natural part of living is dying but we have been preconditioned that we are invincible, and we don't discuss dying as a normal part of the cycle of life.
@@takethisguntandshoveit it was Almost as hard to lose my dog as it was my son, almost.
Its lovely that they have this kind of care at such a sad time.
God Bless you Nancy and leave the life decisions to God. 😊😷👶
I felt pressured every time Pallative Care came in to the nicu at children's Mercy in Kansas. I would have lost two weeks of my little man fighting to live had I listened to them the first day they came to talk to me. I'm glad they're helpful for some, but they were extremely uncomfortable for me when all I had was hope for my baby it hurt to see them have none. I didn't understand who they were at first.. I remember feeling angry as they left and asking if they were actual doctors .. 😑
Thank you for sharing this. I am glad i heard a negative experience with this type of care because sometimes i want to be a palliative care nurse but i would want to be very conscious of the parent’s feelings
So they wanted u to take him off life support measures and he would have died if u had? Now he is living?
I had a similar experience my son was born at 23 weeks, 1lbs 1oz. Had I not had a mind of my own he wouldn’t be here today. I think they feel as if the can’t live a full life you should let them go.
This is such a lovely program that helps people have more beautiful memories during such a dark time. This must help the grieving process for one of the hardest trials parents' life. I hope the champlain supports them if/when parents choose to terminate as well, especially it ifs late term. That can also be a loving, tragic decision.
My baby girl and I received palliative care after she was born with severe HLHS. It was such a confusing time and the worst thing to ever happen to me and my other children. They were so amazing and caring to my whole family, and made it all so stress free. We didn't have to ask for help with anything. They set everything up. Explained our options. ❤️
My heart go out to all of you may God bless you all.
I personally think this is the most Stong handles underrated position. Trying to stay strong with out breaking down with the parents I know I couldn’t do it
Thank you all for sharing your love and stories all of you are truly good parents and l say you are because they will always be your babies even though they are gone
I found out I was pregnant when I lost a tiny girl only still developing I had to get out no scan I couldn't bear it. A few days later I felt unwell and went back to fo find out there was a tiny boy still fighting my emotions took over every emotion I could think of at once but her face changed while scanning with a thumping heart and that terror feeling I jumped up I told her stop wanted to run. I just knew. He wasn't going to live either along with him being very weak my placenta was too low. They said days but my son had other ideas. I felt him move even grew a small bump lucks held on for 2 more months. My placenta moved no need for surgery and I got 2 days wi5h my boy born sleeping but so perfect. I was besotted with his perfect teeny tiny hands. The twins would be 9 July 4th. They were my miracle as I was told I couldn't have children dew to chronic endometriosis.. love to everyone who goes through this and to my brother who's son was born sleeping and to my step sister Michelle now in heaven herself with her 2 sons b9rn sleeping. Now all our little ones play in the sky's together 😇😇😇😇😇
My baby has been diagnosed with ABS in the abdominal wall causing severe scoliosis and grastroschesis they say she is not compatible with life my wife is at 25 weeks at 37 weeks we are going through her birth Ruby I love so much please
John Hopkins Hospital is the best ever, they saved my son's life along with the University Hospital my son was born with Cystic Fibrosis his father had the gene and so did I. But i could make this a book but won't, you all just need to know they are the best hospital in the world. If they can be fixed they will be, and if not, they will try like anything to get other specialists to come in to compare, to what they might be missing, more than likely he will leave there with eyes wide open and above all many prayers, God needs to be in it as well❤
I can't it's a wonderful program put my boyfriend was put on palliative care in March of 2023 and we could not get an appointment for him until July of 2023 so you passed away in our bed. With no support but me
wow, very cool !
I'm a nurse and worked in labor and delivery. There were times when I worked in NICU and cared for tiny babies. Some babies were sick, some needed to gain weight and others were going to die. One night I cared for a baby boy who was born with multiple severe genetic defects and was slowly dying. I held him and fed him and just loved him. His family didn't visit, I guess they had already mourned his death. So the nurses became his family. He had clubbed feet and die ears and kidneys that were deformed and barely functioning. I told him as I held him, that we're going to love you until you die. It was very hard!!!
A Trisomy baby. Thanks for your compassion and hard work in caring or the smallest and vulnerable patients. 🙏🏽
I have seen this same comment copied and pasted 3 times in this comment section already. All different people.
John’s Hopkins is the best!
My best friend lost her baby at 24 wks back in 03. She left her husband because in her mind it was his fault their daughter died. She didn't talk to me for almost 3 years because my daughter was alive. Her new husband doesn't allow her to talk about the baby because that was her past.
c harrington I truly hope the two of you have found a way to move forward as friends, and that your friend has found healing and strength. Sounds like she has a true friend in you. God bless, and have a healthy and happy new year! Best wishes from Ontario Canada 🇨🇦. ✨💐✨🙂
Kimberly Knott like a dogs knott? Perv
So difficult. She could try thinking your daughter isn't her daughter she is grieving. Her new oh shod allow her to talk about her daughter.
She sounds like she has serious issues
How was it her husbands fault
I was in the icu when I was born because I had a whole in my heart.Luckily I’m here today,but I’m sorry for those who aren’t.):
If i could rewind and do my life over, Id get into palliative care.
The photos are so beautiful and carry such emotion.
LIKE ....If you have ever pushed that big RED button!!!
Thank you to now I lay me down to sleep
And all the wonderful people at simplicity funeral home and services for his wonderful home going
Preemies are great and resilient. I would love to show you how well they do! Love them and let them sleep. Though tiny they can move mountains!
That Chaplain is so wonderful... they all are. The Chaplain said something so powerful. After they leave the hospital 7 move forward it's so great to have someone to remember their experience with them. It's like it matters & it's important. Love what she said about that. 💙🙏😇
So beautiful 😢❤🌹🌹🌹🌹🌹
B
Beautiful and timely.
Mary Angert que
😢
OMG MY HEART!!!!!!!!!!!!
Sincere condolences 🙏🏽
💛🥲
Not now
🙏🏽
0
💕🙏💕
🥺🥺🥺
I dont understand the subtitles, has this person ever done a video before?
I produced the video. I did not produce the subtitles. I don't know where they are coming from. I will look into this. Thank you for bringing this to my attention.
This has been fixed.
Leonard Frankford Good, very moving and insightful.
They aren't in pain. They are just tiny. Give them soon and chest contact with the healthy parent. Cutie. Your live makes them grow. Smile! Happy Monday! 👍🙂👶
You don't know if they are in pain or what's best