Having a child with Edwards' syndrome (trisomy 18) | NHS

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Three families tell their story of what it is like to have a child with Edwards' syndrome.
Edwards' syndrome, also known as trisomy 18, is a rare but serious condition.
A baby with Edwards' syndrome has 3 copies of chromosome number 18 instead of 2. This affects the way the baby grows and develops.
This video contains sensitive content that some may find upsetting.
00:00 - Diagnosis
02:09 - Memory box
03:10 - Mosaicism
05:13 - Processing results
06:50 - Life now
08:08 - Planning for end of life
09:22 - Telling a sibling
10:28 - Building further memories
11:12 - Being prepared for the future
12:32 - Grief
15:42 - Family
16:07 - Support
You can find out more about Edwards' syndrome at www.nhs.uk/conditions/edwards...
You can get support and advice from charities such as Soft UK
www.soft.org.uk

Опубликовано:

15 июл 2024

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Комментарии : 23

@sherylstradinger2052 Год назад

Hello. Just stumbled upon your video. Our daughter, Nicole, had Trisomy 18. We knew from the day she was born that each day was a gift. She passed away Feb 22, 2022. We got to have our amazing young lady for 36 years, 5 months and 22 days. She had so many challenges, but was a effervescent and vibrant personality. She very rarely cried throughout all of her life. How blessed we were to have had her with us this long. We will miss her forever. Bless your hearts.

@IvanFT7 6 месяцев назад

Hey, r.i.p. my brother is about to have a baby and is diagnosed with trisomy 18😢,hope ur daughter is resting peacfully

@janicejames706 9 месяцев назад

I just had a baby girl 09/16/2023 who passed away 15 minutes after birth but I was able to hold her and let her know I loved her so much and it was okay to go to heaven and fly with the angels 🕊️💔🕊️

@bethderrico5259 7 месяцев назад

My heart breaks for you. May you find all the blessings that this earth can offer. You deserve every one of them! From one mother to another, you are the very definition of strength!

@ariefattahiyyat1699 9 месяцев назад

Hai, im from indonesia. I just have one daughter with this syndrome... it is so hard for us to believe. I love her so much, thats why make me cry all the time

@louann4400 Год назад

My grandson was born with Edwards he died 6 hours after birth the whole family was with him his name is Isaiah our angel

@pcassidy5328 9 месяцев назад

Thank you that was a lovely video to come across. My daughter Tara had trisomy 18, she lived for 3 hours and we were so thankful to have her, she brought so much love to us.

@rhondahunt9888 10 месяцев назад

Bless you all and your lovely families. My eldest girl had five pregnancies and three live births. First one had to be delivered stillborn. I convinced her to hold him; her first son. Number five miscarried. Children are precious. Best wishes to you all! ❤

@barbbeulah7139 5 месяцев назад

I so feel for you all, beautiful babies now in the arms of jesus ❤

@sherylthomas3687 Год назад

My son passed away 20 minutes after birth. That's when I got a chance to hold him.

@laurenanderson7330 Год назад

I hope you and your family are doing well

@alisonalibongo3177 Год назад

So sorry 🤍🕊️💫

@tuesdaypatience 10 месяцев назад

I am so so sorry 🙏🏼🙏🏼

@fernemcallister6774 Год назад

Precious little Hannah

@sherylthomas3687 Год назад

I wish my daughter had the chance to hold her little brother. 😔

@kygal Год назад

I planted roses for my miscarried baby. I can understand how therapeutic a memory garden can be. I hope these families find comfort and healing.❤

@annabrahamson4320 5 месяцев назад

I still have a palm tree and a vine from a tiny plant arrangement I received when I lost our baby in week 12. That was 42 years ago! But the palm is getting way big would like to root it, not sure of that is possible. Also our giant hard maple trees were planted the day we lost him. I don't know, I thought it was a boy.

@fernviking7909 Год назад

So sad & yet so beautiful at the same time!

@pioneercynthia1 4 месяца назад

Beautifully made. God bless you all.

@sallyfoley5242 Год назад

❤

@SMcCaskill 7 месяцев назад

The video is precious. All those sweet babies. ♥️♥️♥️ However I do want to say that the background music is much too loud and needs to be redone.

@Loumains 2 месяца назад

The babies,these wee angels are beautiful I always believe God sends them to teach us life lessons and to be humble and patient and to remember to love one another in life as we are all human,these angels lived they were here,would be nice if the medical field would remove the,incompadable with life because these beautiful angels do live even if it’s short they still lived ❤I lost a baby and think of my baby often but I know I will see my baby in heaven and I’m blessed with 4 grown up children 2 sons and 2 daughters and we talk about the baby I lost as he’s still their sibling ❤