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.
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
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.
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 😢
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.
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.
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.
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 ❤️
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.
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.
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❤
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
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!
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.
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
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 ♥️
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.
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 ❤
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!
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.
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.
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
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!
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
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!
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.
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.
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.
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
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.
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
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
