Trisomy 18 Life Expectancy | My Daughter's Birth Story Part Two 

Hi there! Thank you so much for watching. Are you pregnant or thinking about becoming pregnant? Watch today's episode about my patients journey with Trisomy 18 and she and her husband were committed to caring for the child through every single moment. What are your thoughts about Kristin and her daughter Hannah? Have a great week, Tracy

All Hannah knew in her entire life was love. What a great life ❤

We had our Jake for 4yrs!!!! They change our world as we no it forever. We had no idea what we were doing but we learned we laughed n we love!!!! They r truly gifts from God that we were chosen to have him in our lives!!!! Greatest gifts of all!!!!

6 weeks ago my precious grandson River, who had full T18, passed away after coming home for 9 days and getting the rhino virus after being in the hospital hid whole life, over 4 months old. He was such an amazing baby and my daughter and son in law were amazing parents. River was loved by everyone who meet him both in person or via video visit. Not a moment goes by that I don't miss him. He had a bond with his mother that was so very special, and his daddy starts prenursing this fall to be a nicu nurse!! This was a beautiful story about sweet baby Hannah. Much like her Hannah after getting the rhino virus my sweet little River monster got several infections and his little body could not fight anymore. He will forever be in my heart until the day I get to meet him again.

On 4/18/2020, I lost my baby girl Camilla Skye to Trisomy 18. She only stayed with us for 2 days before she was called home. But this little girl, an angel now, showed me and taught me how to always know how much God loves us. Nine months of pregnancy and 2 days of life, I felt like I had know her for years. This was my baby, and although it was just 2 days ago that I had to say goodbye, I'm glad I got to hold her in my arms and sing to her until God saw fit to bring her home. It's hard, I'm mourning. But I have strength knowing that she brought purpose to my life. I want to become a NICU nurse now as well.

Thank you for sharing this family's story. I am a photographer for Now I Lay Me Down To Sleep, and recently did a session for a precious little boy with trisomy 18. The love the family showed was incredibly beautiful. I am so honored to have met them.

I couldnt help but cry when I saw Hannahs Face A true living Angel on this earth. May God bless the family.

What a beautiful tribute to your gorgeous daughter. From one Edwards mum to another, I loved her little big toe and I know she will be with you in your heart forever. Treasure your memories, no one can take them away from you and a huge part of her will always be with you. I lost 4 babies to Edwards. Two miscarriages at 12 & 8 weeks, no cause found, and I was told it was nothing genetic, I was just unlucky. Then I had a fullterm (3 days past her due date) stillborn daughter who weighed just under 8lbs. They did a post mortem on her and could find nothing wrong with her so they put it down to 'cot death' but in the womb. A year later I has my son by elective caesarean at 37 weeks as he was breech and they didn't want to let him go full term because of what happened to his sister. From birth my instincts were telling me there was something wrong with him but no one would listen to me. He was checked out by 6 different paediatricians in the 5 days we were in hospital after his birth and none of them found anything wrong with him. No one listened to me, assuming I was just an over anxious mother because I had lost his sister the year before. We took him home and my health visitor dismissed my concerns when I was worried he wasn't reaching his milestones saying he was a few weeks early, he's a bit behind, he'll catch up, stop worrying, just enjoy him. In the end I had to keep my concerns to myself as I was afraid they would think I had post natal depression and they would take him away from me. Long story short, when he was 5.5 months old he had a cold and was very congested and I noticed his breathing was quite laboured. My instincts once again told me he wasn't looking right so I decided to take him to the baby clinic to get him checked out. I put him in the car and as we were at traffic lights I glanced down to see he had turned purple so I pulled over into the car park of a solicitors, grabbed him and ran into reception shouting at the receptionist to call an ambulance. This was 21 years ago and I didn't have a mobile phone. He ended up in our local hospital where they worked in him for 5 hours before transferring him to St. Thomas Hospital in London. They also worked in him for another 5 hours before coming to us to say there was nothing else they could do. They said they would phone GOSH, Great Ormond Street Hospital, to see if they had a bed and they did so he was transferred over there and withing 45 minutes they had him intubated and put into and induced coma so his body could recover. He was in PICU for 10 days before being transferred to a respiratory ward where we were trying to get our heads round that he might need a tracheotomy to prevent this happening again. Then the genetic team paid a visit and asked to take bloods as they obviously saw some signs that caused them some concerns. A week later we were called into a room where the consultant told us our son had a rare form of Edwards Syndrome/Trisomy 18. That they only knew of 6 other children in the world who had this particular form of Trisomy 18. Of the 6 children, 5 died between 6-8 months, only one lived until 13 months. They said our son would have no quality of life, they said he would never walk or talk and that his condition was incompatible with life, to take him home and expect him to die at any time. They were literally that blunt. We were transferred back to our local hospital for a week where we were taught to do CPR and resus and then we took him home. Well our son lived happily for another 10 months. He was never in any pain, never cried, was not on any meds. He pulled out his nasogastric tube and preferred being fed by his habermann bottle. He progressed onto solids with his favourite being carrots and avocados. He went to special needs swimming and was at his happiest in the warm water were he used to sing to himself. He charmed everyone he met. He had a happy life surrounded by love and was the most delightful little boy ever. But sadly the doctors were right and eventually one night he had an epileptic type fit and 3 weeks later his heart stopped during the night while he was asleep. Even though we had agreed to no resus, when it happens your instincts kick in so my husband did mouth to mouth and CPR while I phoned for an ambulance. Our local hospital whisked him away while we were in the parents room phoning our families to tell them he was gone. Then they came and told us he was intubated and we could go and see him. They hadn't had his notes there in A&E and didn't realise we didn't want machines breathing for him so they took him off the machines and put us in a private room. My mum flew over from Ireland the next day and we all got to say our goodbyes as we wanted to let him go when he was ready. I did not want him being kept alive on machines. Our little soldier lived for another 16 hours and he died in my arms when he was ready to go to sleep. I felt his heart stop beneath my fingers and I knew he has gone to be an angel. He was an absolute joy and I treasured every day of his short but wonderful life. I just wish I had had more time with his sister but I only had half a day with her, but at least I got 15 wonderful months with my son and have many happy memories of our time together. We had had genetic testing done after our son was born and found out my husband was a carrier of this condition even though he wasn't affected by it himself. We had lost 4 babies over a 10 year period and none of the doctors had even suggested genetic testing. A simple blood test would have showed he was a carrier and we could have been spared 10 years of heartache. I now say to any couple who are experiencing multiple miscarriages to insist on genetic testing. Healthy babies just don't die for no reason. Having said that I do not regret having had our son, but couples should get more support from doctors and more answers when they keep losing babies. I hope my story helps others to speak out and push for testing to get answers.

Such a beautiful story! Our first child was a beautiful girl born with hypoplastic left heart syndrome. She lived for 35 days, from November 1, 1996 till December 6, 1996. She died with sepsis. My husband and I do not regret having her, and found comfort in knowing we did everything possible to try to save her life. I still think about her and love her to this day.

I remember hearing the diagnosis, I was numb. I will never forget my son. Thank you for this video.

I am a retired R.N. and have had the privilege of caring for Special Needs children like Hannah and other Illnesses also. I count myself privileged and that God chose me to care for these ANGELS ON EARTH and be a part of their families life in doing so. I am retired now. I still keep in touch with the families as I am able.

Wow, what a touching story. I am 39 yrs old and 19 weeks pregnant. I was told today that my unborn has trisomy 18. The internet can be my worse enemy or my best friend, so I have decided not to do anymore research about trisomy 18 because it was breaking my heart. One thing I do know is God is in control. Thank you for sharing your story. God bless you!

Wow. I watched this video because I’m a NICU nurse and have a Trisomy 18 patient in my unit. The respect and honor you hold for the providers who took care of your daughter is inspiring. God is good all the time. Your family is beautiful.

Im 21 years old I’m 30 weeks pregnant my son has been diagnosed with trisomy 18 thank you for this video

Thank you for your story. I am 6 months pregnant. My son has been diagnosed with T-18. I’m having a rough time figuring out all of it, and feeling selfish for wanting to keep and meet my child. I know GOD has a plan for my family. Trying to stay positive!!

What a beauty of a little baby and a strong, loving mother. I am also a nurse (L&D) and also a mom to a Hannah and a James. This was such a sweet story of genuine, selfless love on the part of Hannah's parents. May the Lord give you His perfect comfort until you rejoin your little Hannah, who rests forever safe and happy in His strong arms.

You not only gave your daughter life in the traditional sense, but gave her the very best life she could have known; loved and well cared for, and as long as was possible. Bless you, your husband and all your gifted providers.

What an eloquent and amazing mother...I was mesmerized by her words.

All I can say, with a full heart and tears in my eyes, is thank-you for sharing this beautiful and humbling story.

So sad but, you had the opportunity to show her for nine months that she was loved.

I lost my son last year from this .it was heartbreaking . My son Nicolas. Rest in peace my angel,and reast in peace Hannah. Thank you for the video❤

What a heartbreaking story filled with an immeasurable amount of love.

I am a grandmother who not only has lost one grandson but has 3 of his siblings & blessed with 4 of his cousins. I can not immagine the pain that my son & wife went through nor any other parent's pain of losing a child. i can know what personally went through. We were blessed with him for 20days & in those 20 days he did more to touch peoples souls than most do in a lifetime. His was born extremely early which they called a micro-premiee, You like my daughter-in-law who i love as my own daughter, are some of the strongest women that i know. i wish i could hug you, it probably wont matter to you but to me it would mean alot.

Thanks for sharing your story. 8/01 I lost my baby girl to trisomy 18.she stayed with us for 25days. I miss her everyday.

The amount of grace this mother has is incredible. She gave her baby the best possible life she could knowing the outcome was going to be unfavorable. My heart goes out to her and her family. God bless you all and God bless your sweet Angel baby Hannah. ❤️

Umm.. thank you, for the video. I’m eldest son of the fam. My mom’s pregnant with my lil sister diagnosed with T-18. I feel... not alone!

Amazing parent/s, and you can totally see the beauty and vitality in Hannah's eyes in the pictures shown.

My son was born to me at 21. Now, he's trisomy 21. 40 years later I'm so blessed. You folks done the best thing for Hannah. God bless you to this day. Angie

Thanks for being so brave caring and sharing yr experience, I’m taking care of another baby with same Dx home health peds nurse here , I listen to stories like yours to get more insight on how parents are feeling and how I can be more supportive to them , been a nurse for 21 yrs but you never stop learning, god bless you and yr family 🧚🏽‍♂️😘🥰 take care

Sometimes we just have to speak positively upon our kids so instead of saying an infection is gonna take her from us just say she’s gonna be with us forever… this is a beautiful story and thanks for sharing this story

Wow. Amazing. So happy to hear that you, DR. Papa and this amazing mom have such a special observation, I know that many people today do aboard baby’s with these diagnoses. Having been threw this myself ,I’m 28 years old , my special third child Renana Chaya that was diagnosed with trisomy 18 and lived with us for amazing meaningful 4 month! We enjoyed every moment, me my husband and her two sisters (4,2 years)

What a heartbreakingly beautiful story. Thank you for sharing your Hannah with us. She has touched many hearts. Sending love. X

Thank you so much for sharing! You are all very special!

Thank you for sharing your beautiful daughter🙏💞☺

Wow what an amazing mother, and what a beautiful little girl! I’m so touched by this video. My little boy is also life limited but because of brain injury at birth. I felt a lot of connections to what this mum was talking about, and I can sympathise with a lot of their experiences together. My journey with my son has been a hard one, and I have dealt with it badly to say the least. My son is such an inspiration to me as was this little girl to her family. I’m currently in hospital with my son after a lengthy 5 week stay in picu. Infections are scary, they come out of nowhere and you don’t know whether you’ll be going home again. My love goes out to anyone who has a child with complex needs or life limiting conditions or to those who have lost their little ones. When you become a mother, you don’t expect to have to put your child to rest, or to plan it when we should be planning their futures. But they bless us in different ways, and my son has taught me more than anyone could teach me in a lifetime! 💜

Thank you for sharing your amazing story. So inspiring. I’ve been told I have a 1:5 chance of having a child with Trisomy 13 or Trisomy 18. I’m 38 and always wanted to be a mum. I feel blessed to be pregnant but have been terrified all weekend of what will be. I’m due to have the NIPT test Monday. This brave story has inspired me to be brave myself no matter what for the sake of my unborn child. Thank you so much for sharing 🌈💕 Hannah was truly beautiful and you were blessed ❤️

Thank you for sharing Hannah with us. She was such a sweet, beautiful little angel that left way to soon but she's forever in your heart. I loved her smile. You will be doing so much for families that will have the same situation but you will be able to truly understand what they are going through and I am sure you will be a comfort to them and you were already a comfort through this video for people that are currently going through it. God bless

Live your life with purpose! Hannah's purpose was complete 💘 LOVE.

Beautiful story. So sorry for the loss of your Hannah ❤️

I had a little boy, Elijah, with trisomy 18, at 21 weeks. It was a very painful time

what a beautiful baby Hannah was.

She is absolutely beautiful. This is a beautiful testimony

May the Lord bless this woman! I have been crying through the whole video.

Thank you for sharing your! So sorry for your loss. Many prayers and blessings are being given in your name

Beautiful story RIP Hannah

You are such an incredible mother. Your sweet Hannah knew what love was when so many precious children do not. I'm so sorry for your loss. She is a beautiful Angel. ♥️

Thank you sharing your story. It means so much to me and comforts me at this very hard time.

What a darling baby girl. So sorry for your loss. So happy you had some time with her. She knew she was loved and adored. Her life was short but full. Thank you for sharing your story, it must have been difficult.

🙏❤ thank you for this video for sharing your experience

How wonderful. How sad for the baby, but wonderful the mother is giving back. God bless you.

Thanks for sharing

Oh Dr Papa! What a inspirational woman and mum this lady is. I think God did choose her and hubby to be Hannas parents. Yes it is heartbreaking but at the same time is a beautiful selfless life of a mum having a daughter with high needs. God bless you all and God bless Hannah!! a little fighter till the end of her very short life. xxxxx❤️❤️❤️❤️

This makes me wanna cry because it was discovered in the 7th month of my sister’s pregnancy that her daughter Regean had Trisomy 13 and we knew nothing about this and she was advised that these babies never live more than a few days after birth and it was best to induce labor and so they trusted their doctor and had her at 7.5 months and she was alive until she came out and my sister and her husband and my mom spent a little time holding her and then they took her away and I believe if she knew that her baby could had lived longer she would have carried her to full term because Carla hoped she was gonna live even if only a short time because she wanted what all mom’s want to see her baby open her eyes yawn cry etc and I know if the dr would have said that she might live for up to 3 years she would have jumped at that. That being little Angel I’m so glad they got that time with her and those smiles and cries and cuddles and I know it would had meant so much if we all could have had that with Regean

What a beautiful story and heaven has gained the most precious angel!

A beautiful story ♥️ God Bless you and your family 🙏🏼

Hannah is a beautiful Angel. I wish you the very best. God Bless your family.

I have lost a baby girl too. She didn't have trisemy18 but she had a heart condition because I have Lupus, I didn't know it could cause heart defects. I was very afraid and heartbroken during the pregnancy and after. I was very alone because my husband and his mother blamed me. The doctors refused surgery because they couldn't get her under anesthesia without her dying they couldn't hardly keep her alive on the ventilator. They changed to a different one that did short quick breaths I didn't want my baby girl dying on a cold table cut open alone. I wanted to hold her in my arms and tell her that I love her and that I didn't want her to suffer. I wanted to tell her it was okay to go to heaven and I would see her again. My husband and his mom got angry and told me I was murdering my daughter( doctors don't give you the option to stop life support if there is any chance at life) they told me they hated me. But ultimately I was able to hold my Kaitlyn Arabella and tell her I love her and let her go. She lived for 5 days after birth. That was 11 years ago

😌beautiful story! Thank you!

GRACIAS. THANK YOU SO MUCH.

My daughter would have been 7 months today. I had her for 11 days and I miss her everyday

I have had this experience too. The hardest time of my life 😪

Beautiful story.

Thank you...

My heartfelt thoughts to Hannah and her family ❤️

I don't know why this was in my recommended videos to watch but I watched all the way to the end I cried at the end why because my wife just passed in October and the passing of everyone animal or human makes me cry lately but I know they're all in a better place God bless Hannah

So brave. Beautiful.

What a beautiful testimony of love and Hannah's legacy. 💕 Dr. Papa, I noticed that this was at Cook Children's Hospital, just down from where I now work. I'm a pediatric and neurodevelopmental vision specialist relatively new to the Ft. Worth area. My name is Dr. Brandi Stewart. I hope sometime that maybe I can meet you and/or some your colleagues. Thank you for all that you do.

This was heartbreaking and heartwarming at the same time. It made me take stock of everyone and everything I love

That baby has such a wise, wonderful little face.

she was so beautiful.such a little angel.i am so sorry for you.i send big love and hugs.nadine😘

God bless you always.

Hanna served her purpose. You are blessed.

Hannah was beautiful! What a blessing she was to you! You are a courageous woman!

Total engineer like thinking. What an awesome person she is.

Gorgeous baby!!!

I worked in a kids hospice for 4 years and looked after a beautiful little girl with Edwards syndrome. She died age 1. But looked like a newborn. She was amazing. Called sapphire

God bless you and your family. Hugs sweetie..I am so sorry for your loss. 🫂🫂🫂💖💖💖

I’m 19 years old, my baby girl Naomi was diagnosed with Trisomy 18 last week. Thank you for the videos💗😔

You are amazing mother to be able to go through this my daughter was born sick but now my daughter is 30 years old they told me she was not to live past 2 weeks and she did it

Balling my eye out

What a beautiful little girl.

What a beautiful baby, Hannah was!!

Thank you ! Hannah’s mama and Dr.Papa What an absolutely stunning and beautiful story you shared with your subscribers. As a new social worker as well as a. Former NICU mama myself I certainly have a special burden on my heart for families facing special needs pregnancies as well as life limiting diagnoses for their babies. I am well prepared for my future clients thanks to you sharing your story as well as researching on my own .

This is a very informative video. I’m also a planner and would want things organized like this if I was faced with this.

I'm 30weeks pregnant and my daughter is diagnosed with trisomy 18 and hydrancephaly(I think that is how it's spelled)! I'm scared but after watching this video I am not as afraid!! I'm set to start an induction when time and do a natural delivery but if any distress I will go to an emergency c-section

She was a little doll, so cute.

May you continue to have peace and comfort knowing that your precious little Hannah is safe in the arms of Jesus in Heaven. 👼🏻🤲🏻💖

Beautiful baby.

Oh my word she was truly beautiful, I will remember her little face and beautiful eyes forever. ♥️

Beautiful child.

Excellence ‼️❤️‼️

Beautiful

She sure is a beautiful little baby!!! She was well loved.

Oh my goodness.... ♡

Omg heartbreaking 😭💔

God did choose you because you are awesome, amazing and perfect for the the big responsibility. You WERE and ARE still perfect. My best to you!

Beautiful little angel! You were so blessed with this precious lil one and the family with the help of God and this wonderful nurse held up strong and proud. God Bless this family always with love and beautiful memories 💞🙏

Lost my first grandson to this last year. He only survived three days. 😢

Thank you for making this video. I miscarried our son who had trisomy13 which I think is very similar. So, so sad.

So sorry.