What it's like to have a baby with Edwards' syndrome - My Story - Chloe and Penelope | NHS

[@frandavies4646]

Such a touching video of your beautiful daughter. I lost my son to Edward’s syndrome at 32 weeks… he lived just 6 hours. That was 44 years ago and I still hurt 😢

[@enib8810]

So sorry to hear for your loss. We also loss our daughter to Edwards syndrome in 37 weeks unfortunately born asleep. Will be always part of our life.

[@ginagelia2880]

I’m so sorry!😞 💔💔💔💔💔

[@hollyjohnson1374]

I am so sorry for your loss ❤ sending love your way.

[@fredricarabina]

May your son rest in peace.

[@chloejordan9174]

Thank you so much for your comment, and I am so sorry for your loss ❤

[@justjulie2859]

My baby boy had full T-18 and had unsurvivable birth defects. He was stillborn at 38 weeks gestation with a 46 minute labor. This was 20 years ago and we still recognize his birth/death day.

[@danhutson3460]

My parents first born baby boy( Stevie) was born with liver disease in 1950 & only lived 6 weeks. My Mother passed away in 2022 at age 98 & she was still asking why he didn't live.

[@katoz9237]

So very sorry 💔

[@Squiglebot]

My sister died of Edwards 40 years ago. My mother started the Edward Syndrome society which eventually became Soft UK. I still miss my sister every day.

[@FlyingSquell]

That is amazing. Your mother sounds like a fantastic, and strong, woman. I’m very sorry for your loss.

[@chloejordan9174]

Oh that's so incredible 🩷 did your mum come to northern Ireland a few years ago for a family day? I may have met her as I know one of the founders was there

[@jackzimmer6553]

How heartbreaking! I know this little girl knew she was loved and has found a place in her parents hearts. God Bless them all!

[@Mandy-rx7rq]

Sorry for your loss. She beat the odds and stayed strong, until the angels wanted her to have fun in heaven. She will always be with you in heart and spirit x

[@micheleclay442]

A beautiful, precious,baby girl and parents.

[@lynnfaust7175]

You gave Penelope what every one of us needs. Unconditional love. She knew that she was safe and surrounded by love. Thank you for your story. I am thrilled you were brave enough to have two more beautiful babies. You are a fine strong person.

[@char_lou]

❤

[@velvet181velvet5]

My heart is breaking You loved her so much and she knows it ❤❤❤

[@mayapastrana4444]

Beautifully said!

[@LCHH]

@@mayapastrana4444I was going to say the same than I saw you already said it so ditto much agreed!

[@chloejordan9174]

Honestly, thank you all so much. These comments really mean so much to me 🩷

[@carmapuffer2251]

I also had a child with Edward's syndrome (Tri-somy 18). My Jordan lived for 11 years. She was the most beautiful child. Although taking care of a child is very hard and you are are hospitals and clinics sometimes more than home, it is the greatest blessing you will experience. So chose to take the love lessons she taught to heart and bring them into everyday with your other children. You were touched by an angel, not everyone gets that gift. I talk about my child to anyone who wants to hear her story, she was pure joy when she was here and my memories of her are also pure joy. I thank God for giving her to me, I don't take the love a child bring to my life for granted. Much love and many prayers to you and your family. In memory of Jordan 5/17/1998 -10/11/2009 always in my ❤️

[@VioletsvisionsCat]

Much love to you ❤ and your beautiful daughter, Jordan. If anyone was touched by an angel, it was you ❤❤

[@BrookShvaitser-ko8vg]

Thank you for sharing Penelope’s story. My son Jacob had Trisomy 18 as well and died shortly before he was due to be born. I am happy that you were able to have time with your precious daughter. I wish that I had gotten some time with my little boy. It’s wonderful to see what a blessing these special children are. Their lives matter and touch their mommies and daddies hearts forever. I am sorry that you’ve lost her. God bless you and your husband, and thank you for sharing your sweet angel’s story.

[@Msmorningsunrise]

I am glad that you stayed married and conquered your troubles together and then went on to have a larger family. Often people cannot cope with difficulties like this and the marriage breaks up and the care of the child suffers. I hope all goes well for you in the future.

[@patminard2015]

Penelope had wonderful and loving advocates for her parents. I salute you for your love and advocacy for her. You gave her the best life she could have by your love and devotion. I am so sorry for your loss.

[@debracyphert5934]

I’m so sorry Penelope passed away. She was a beautiful little girl with such a bright smile 💕

[@chloejordan9174]

Thank you so much it means a lot 🩷

[@yazminavinante3177]

I just found out about my baby. It has been the worse news of my life. Thku for sharing it. ❤

[@vpej8508]

What a wonderful family. Penelope was a gift, and mom and dad are wonderful parents to let her live and had her life with them. She was special, and her mom and dad are special because they made the choice to let her have her time with them on this earth, and keep her memory alive for her siblings❤

[@vancouverislandandthething3945]

To Penelope's Mum and Dad, I am one more person who now knows Penelope was here and will remember her. 💞

[@amystanczyk4775]

Thank you so much for your video I just lost my son to Edwards syndrome your daughter was beautiful and I'm so glad u still celebrate her like she's here that's wonderful

[@songbirds3712]

May her soul, and the souls of all the faithful departed through the Mercy of God, Rest In Peace. Amen. 🙏🏼❤️🙏🏼❤️🙏🏼❤️

[@lizturner267]

What a wonderful little life you gave her. She mattered. You and family gave her the most important thing in life…love.

[@InvisibleVicky]

I looked after a little girl with Edward’s. She lived till 1 and was the most gorgeous girl. I loved her. I loved working in the hospice but it took its toll and I left after 4 years

[@joannemadden7449]

My Husband was a Police Officer he was murdered 4 months before Your Precious Angel, he will take good care of her until you are all reunited once again ❤

[@cw4608]

I hope you are doing well after your loss.

[@paulamarshall3810]

My gorgeous god daughter had Edward’s Syndrome. My friend was taken to hospital at 32 weeks pregnant, as baby had stopped moving. I was at the hospital immediately after she was born and I was so honoured to be able to be with her for a short while. Our beautiful wee soul (Kirsty) was born on 1st April and passed away on 28th April. Forever in my heart ♥️

[@kimberlieverschoor3814]

Penelope was a beautiful little girl and was blessed to have you as her Momma!

[@sharonruthenberg3368]

You and your. Husband provided the best love and care for Penelope❤️. Thank you for sharing your inspiring story ❤ and reaching out to our world🙏

[@garvy12345]

She did live! She was very loved and I am different and changed in a better way for just having heard of her story! My son was born at 28 weeks with Dandy Walker Syndrome and Hydrocephalus. It was a very uncertain time . He is now 14 (so I don't know what it is like to loose your child, and I am not pretending I do) but I do know how helpless you feel giving CPR to a child who won't breath on their own, it was awful and I was sure he was gone (he has the type of seizures that can interfere with breathing). I am always so scared and worry about so many things! When you were talking about how happy you were to spend the time you did with her, your video made me stop and think about how lucky I am to have him and spend as much time as I have with him and still do! I know your daughter is looking down at you, proud as ever that you are helping people in her name!

[@jeanzyc.5103]

Sooo cute. Thank God for these precious little gifts. Although her life was hard, God had a purpose and she received so much love from mama and daddy and family I'm sure. Now these precious ones are perfect in the Lord's arms!

[@nicciroberts7928]

Thank you for being so honest and sharing about Penelope, it is incredibly powerful and moving. What a precious and much loved daughter, every day of her life was worthy of living. No doubt you impact families, facing the same situation that you went through, in ways you will never truly realise or understand. Well done. Heartfelt regards.

[@LCHH]

Penelope is Beautiful! You got a chance to have her for 2 years when the odds were not very bright! That is a huge blessing! She’s the luckiest little girl to have had you for her mother! Condolences on her passing. Hoping life finds you well!

[@ZieSpiralOut]

You are an amazing woman. The subconscious instinct would be to pull away from a baby who doesn’t have a chance at a long life but you both filled her 2 years with as much love as you could. And at 18! I can’t imagine what that was like and you have my upmost respect as a fellow mom.

[@jopoochie1701]

She knew she was loved. That's what's important.

[@lesleyfoulds4339]

Hope your sweet girl is having lots of fun with the angels x

[@carolerae1899]

May God Bless you all and keep you well! We will see Penelope in Paradise! ❤

[@MrsSherrymcm]

I’m truly sorry for your loss. Penelope was loved beyond measure & she knew it. God bless you ❤

[@melodiephillips3514]

Hid bless you! I understand your pain. My son Kevin was a Trisomy 18 baby, but I didn’t find out until I was at 27 weeks. After all the genetic counseling and amnio’s, and so many tests at 31 weeks they said he would most likely not make it. It was devastating. Cherish your memories. I didn’t have any because Kevin died in the birth canal. 362 grams at birth!

[@railwaychristina3192]

Amazing she was born alive....must have felt your love and fought to live

[@songbirds3712]

Mom, you are amazing!!

[@Momofmanylittles]

I lost my second son at 35 weeks. He was delivered stillborn 14.5 years ago. I would have moved heaven and earth for Hunter.

[@juliaingrassia8996]

Blessings & Prayers to you & yours. XOXO

[@tanyah649]

I learnt not every pregnacy is thesame it different my 1st waters broke died and then the 2nd water's broke had a c section lived from 24 minutes and died and the3rd water didnt broke had to have a c section earlier baby heart beat indestress was born alive and stayed in special care baby unit he is now 12 years old this year

[@kathysparks6338]

Thank you for sharing your experience with Penelope. God bless

[@ecuadorexpat8558]

Such a precious little Baby ❤❤❤ thank you for sharing your heartbreaking story

[@rhondaholland719]

Thank you for sharing Penelope’s story. I can’t imagine what you both went through. How blessed you had 2 years with your baby angel God Bless ❤

[@irisbradley8777]

What a beautiful baby. 🙏💕

[@ZoeKenney-qd3iq]

Thank you for sharing your special Life journey with sweet Penelope yes she will always be with you all. You & your husband are very compassionate souls for this world bless you & wish you every success xx

[@rosah.901]

Beautiful Penelope ❤❤❤

[@cindyjulian9534]

My sorrows are with you. She gave you joy and you gave her joy. We celebrate my son's birthday every year to. I also count him in. My daughter last year had a stillborn that we remember too. God bless you and your family.

[@archerandthemouse]

Beautiful share. You and me mama, we walk the same path with the same heart. So much love.

[@lynnholmes4158]

What a brave young lady her dad and family and such a beautiful little girl.

[@cherieetaylor6262]

I have had my results from the screen test im high for Edwards syndrome and patau syndrome got another blood test tomorrow to see for definitely my twins have it omg my heart breaks for you all 😢xx

[@1rrrrrrrrrrr544f]

Did they have those syndromes?😢

[@FlyingSquell]

Thank you for sharing your story and beautiful Penelope with us.

[@grobanite4ever85]

She was such a cutie pie.

[@loripowell5088]

I am 65yrs old and had 2 healthy boys. My youngest had PDA which was repaired by surgery. I am shocked with as much reading as I did on birth and babies and any and all possible birth defects, injuries, syndromes how have I never heard of this? Thank you for sharing your story. God bless you and your family.

[@brenmanock]

Rip little Penelope. You are great parents

[@katoz9237]

So sorry for the loss of your beautiful, sweet baby girl💔

[@BorisYeltzin]

We just found today out our baby has Edward’s system and we are due in September. Our life has been turned upside down. I’ll take any advice to help my wife.

[@joannadearest8318]

How incredibly generous you are to share Penelope's story! You will never know how many hearts you and your husband and Penelope will touch.

[@rgotrinity9054]

Bless you and your family, sweet lady! Thanks for sharing your beautiful little one's life❤

[@tondriasanders6306]

“She also lived” I have suffered great losses as well and I needed to hear those words… They also lived 💜

[@inipin510]

❤️

[@grobanite4ever85]

I am so sorry you lost your beautiful baby girl.

[@dannadonahue916]

Penelope was such a beautiful gift from God. Our lil Beauty, Carah Grace also had T18. Hers was Mosiac. We did not know of her diagnosis until she was born. She had several abnormalities at birth which were very alarming to us as first time parents that should have been detected. We feel it was God that allowed us to not know until then because we wouldn’t have made any other decision but to have her. She was perfect to us. She lived 15 days. As bittersweet as they were, we learned so much about each other. She was a fighter. She taught us how to be her voice, her advocate, how to carry on her legacy, how to truly have unconditional love, and how stronger we truly are. Our lil Beauty is celebrated every day of our lives still 22 years later. We celebrate her birthday, her legacy, and above all her beautiful life. She made us parents. She now has a little brother who knows and loves his sister very much. When he was in kindergarten he drew a family portrait. He drew Carah Grace as an Angel up by the Sun and the clouds. He is very proud of his sister. She will always be a part of us.

[@kathylecluyse7820]

Burying a child is something no parent should have to live through.

[@AirQuotes]

That sounds difficult but what a wonderful family.

[@seisies-mama]

⬇️WILL NEVER FORGET Penelope ❤🙏🏼🫂

[@PatriciaGodboutArt]

Your kids are all so beautiful, I am so sorry for the loss of Penelope. I love your attitude and the way you celebrate her life.

[@kimbradshaw1480]

Penelope lived a brief but beloved life. God bless all of her family who had the love in their hearts to do this.

[@jillnichols9343]

So glad you gave her a wonderful chance of life. Every child deserves that regardless of their condition. God will bless you for your selfless .ove.❤

[@dianeryan2440]

I'm so sorry for your lost , may God Bless you and your family in Jesus name Amen 💗❤️❤️🙏🙏🙏🙏🙏

[@StephAnie....]

Penny was s o sweet and beautiful ❤❤❤❤❤

[@krztn]

She had an angelic smile. She's an angel.

[@cherjohnson5807]

I’m so sorry for your loss

[@juliebriz1703]

Aww she looked such a sweet child. Lovely little family ..

[@alaskakathryn1]

Such a good mama. ❤

[@bettybelongia7213]

😢😢❤❤❤

[@wandaanderson9569]

❤️❤️❤️❤️

[@sherriburns9746]

Omg! She was so cute! She lived and loved life! Hard to handle but she was a gift in the time that you had her

[@lisaleviner8982]

So much love….💗🙏🏼

[@ambramarrs7325]

I am so sorry for your loss 😢

[@Country_Girl63]

She was a beautiful baby!

[@amyknutson8118]

I am so truly sorry your PRECIOUS BEAUTIFUL passed away. I am so happy you have 2 more perfect girls as well.

[@3isactuallyalot]

Thank you for your story..❤

[@jdrose1000]

I’m sorry 😢

[@merylliacarranza6839]

Thank you for sharing about your sweet Penelope with us!

[@TessA-es3if]

Hugs to you. ❤

[@redbeard9674]

My wife and I went to the specialist this morning, she is 15/16 weeks. We had a blood scan that came back a week or two ago that showed high risk of t18..we were shocked of the news but had hopes that maybe it was false..buy this morning our son had all the markers a the specialist said we went from a 91% chance to 99% just from the ultrasound..our world crumble right then..of course you have the question "why" but that's never going to a answer...I'm so heartbroken... I'm so sorry if you are a person reading this hoping for a happy story..we have had a long battle to try a have a baby, went through ivf for our first son 2 years ago after 5 years of trying, thus baby was natural, which made us both feel like we were normal (that was short lived)..now we have this news...I'm so numb right now

[@mithinie]

❤

[@AlanBamford-rm4di]

God less you both 🙏

[@debbie4220]

🕊️🙏🏼🕊️

[@onion6foot]

❤

[@mom2mmpt]

You were both very brave. It must have been difficult to enjoy her sweetness and personality while knowing it may not last. But you showed the love she had for you to your other children so they can appreciate her impact on them as well. When parents lose a child, I imagine it to be like a car crash both parents were in. You are both reeling from the shock and your injuries. You are barely able to care for yourself let alone your spouse. But when several people who have been in their own crashes come together, they can help each other. It's not personal. It's not a shared loss but a shared experience. Support groups are so amazing and provide a purpose for those who are suffering. To know you have helped someone else takes away some of the burden the grief brings. I wish you both and your children nothing but the best. Thank you for sharing your story.

[@KDSima]

I am so sorry for your loss. I know it is heartbreaking but at the love u have for her at the same time is a blessing. I loss a daughter, and her son as well.

[@m_d1905]

What a beautiful little angel. So sorry you lost her. She was loved so very much and brought such joy.

[@kathyanderson5836]

Beautiful girl!

[@valerief1231]

Sweet Penelope, what a beautiful legacy you are giving her by sharing your families story. 👼🏼

[@juicyjue]

Bless her sweet heart ❤ You are a strong woman. I am so sorry for your loss.