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- เผยแพร่เมื่อ 8 ก.ย. 2024
- SOFT UK is the national support organisation for families affected by a diagnosis of Trisomy 13 (Patau's Syndrome), Trisomy 18 (Edwards' Syndrome) and related conditions such as Mosaic Trisomy and Partial Trisomy. www.soft.org.uk/
Trisomy 13 and Trisomy 18 are chromosomal conditions, where the presence of additional genetic material affects health and development. Trisomy conditions occur on a wide spectrum, with varying impacts on a child's health, development and life expectancy.
Trisomy 13 affects approximately 1 in every 4000 pregnancies in the UK. Around 80% of children are born with FULL TRISOMY 13, meaning that all of their cells have an extra 13th chromosome. Trisomy 13 commonly affects brain development. Around 80% of babies will be born with a heart condition. Problems with the eyes are very common. Babies will also commonly have difficulties with feeding or breathing and some babies will develop seizures. FULL Trisomy 13 is considered life-limiting, which means it is likely to affect how long the baby is expected to live for.
To find out more visit www.soft.org.u...
Trisomy 18 affects approximately 1 in every 1500 pregnancies in the UK. Trisomy 18 commonly affects brain development. Around 90% of babies will be born with a heart condition. Cleft lip or palate can be associated, as are variations in limb development. Babies will also commonly have difficulties with feeding or breathing and some babies will develop seizures. FULL Trisomy 18 is considered life-limiting, which means it is likely to affect how long the baby is expected to live for.
To find out more visit www.soft.org.u...
SOFT UK supports families affected by these conditions, to ensure they have the information and support they need at every stage of their Trisomy journey. We aim to provide the most up-to-date, relevant information on Patau’s and Edwards’ Syndromes, in a way that is accessible to both families and the professionals working with them. Our information is evidence-based and prepared in collaboration with our professional advisers.
SOFT UK’s supports families at every stage of their journey; through pregnancy, when caring, after a loss, expecting a new baby and beyond. There are a range of ways to access our support; through our publications, our befriending service, our social media pages or our Family Events.
To find out more about our supports please visit: www.soft.org.u...
SOFT UK families share their experiences of receiving a Trisomy diagnosis in this touching video.
This video was developed by Public Health England Screening for use in training professionals to work with families affected by a diagnosis of Trisomy. Families talk about how they received their diagnosis, what worked well, what could have been better and what they needed as a family when faced with this news.
SOFT UK's website contains many families' stories of their Trisomy experiences. To read their stories please visit: www.soft.org.u...
© Crown Copyright 2018. This information was originally developed by Public Health England Screening (www.gov.uk/top...) and is used under the Open Government Licence v3.0
Im sorry for your loss, I too lost a baby to this T13. I understand your pain. Thank you for your story. The stress this brings to you is beyond words. I grieve for the loss of my child and the loss of my relationship with my wife due to this T13. I caused us so much pain it broke us apart.
I'm so sorry
I lost my son with the same syndrome. I agree with you to a great deal. Softer words when delivering this type of news. I thank GOD for allowing us the time with my son.
Oh I'm so sorry! I'm glad you got to be with her until the end.
To Isabel’s mom, you have a beautiful happy loving family. Thank you for sharing your story with the world.
I have a Daughter she is 26 years old. She is a lovely girl and she walks by her self. We lived in Brasil.
My daughter 34 has partial trisomy 13 and lives fairly normally. She is actually a unicorn with a college degree so we are lucky.
This is beautiful to hear ❤
I am so sorry for your loss. It is very hard losing a child. Your little girl is an Angel now she is flying high in Heaven. ❤❤❤❤❤❤
sry for your loss
So very sad you lost your little girl.....
I had a daughter with t18, 13.15 chromosomal 21, and I have never been the same, I had a son afterwards and I was so worried that he was going to have a health issue, but with the Kirds Grace he was just fine, my heart ❤️ is with you,
So sadden for the children who suffer and die.
My Down's fetus was removed from me nearly 36 years ago. Ten years earlier, our first born live two minutes from six hours old. Premature. Respiratory Distress Syndrome. We have two living adult children.
Heartaches aren't every day. I ask my baby boys to spend the night. Whatever gives you comfort, do it.
When I was in my mom to be at 4 months, my eggs in me were my gifts for the four I had later on.
Grandma , mother, and her baby. It truly is a SACRED WOMB.
Hysterectomy was removed because of cancer, but my nuturing never ends.
I'm wondering if knowing before she was born would have given you the chance to research and get some more scans would have helped. Our granddaughter has Down Syndrome which is Trisomy 21. We knew the diagnosis ahead of time. My son and daughter in law had time to know what the options were. Thank God she's a healthy little girl.
Good parents
Done I am so sorry for your lost prayer
I have a friend with Trisomy 18 (Edwards Syndrome) and she is 28 rn.
How sad and devastating to the family! I wonder if the syndrome can be diagnosed while in utero? Hugs from me.
True
I also lost my girl from some other syndrome I wish it colud detect in utero
Yes it can be diagnosed in utero.
While neonatal tests and screenings for this and other chromosomal abnormalities do exist and are commonly given, it is worth noting that their accuracy is not incredibly high. Depending on the particular test or screening, the accuracy rate can be as low as 65-70 percent.
I know three mothers that were all given a positive diagnosis for some chromosomal abnormality in utero but gave birth to children without any problems at all.
So while yes, these tests do exist, I would like for the medical community to be more transparent about the accuracy of these screenings… people can make irreversible and life-altering decisions based on an in utero diagnosis that may or may not be true.
I have never been pregnant, but when I start getting pregnant I will personally be refusing all tests and screenings. I know many younger mothers that are also choosing the same path.
Did you get amniocentisis?
Have you had any blood test prior to baby delivery? I would like to know test will miss it?
There are tests. I had to do many and many specialists before I was told it was triploidy, which is 3 of every single chromosome. I was told there is no chance at life and they would do “ no life saving work” to help her when born…
@@alyciamarie4163 Thank you so much for information
I think most of the time Dr's in hospitals have their own agenda when these kids are diagnosed. They don't want them to be a drain on the health care system because often they do have lots of health issues. They don't want the parents to have the strain on all of the families relationships etc. However it's not up to the Drs to make the ultimate choice. They need to give the parents the All of the available information to make their own choice for their child. I think it's medical negligence on a massive scale for parents to be led to believe there is no hope what so ever. Also Dr's cannot predict before birth all of the issues the child is going to have, how severe these problems will be or the IQ of the child. Yet before birth the Dr's do give the option to abort the child, when they don't know for sure whats wrong.
I agree with you. Hospitals are really killing fields for a lot of folks and their families.
Not wanting to help babies with disabilities live reminds me of the eugenic practise of eliminating "imperfect" babies. I remember that my parents were told to leave me behind in an institution in Germany where I was born. An American told them not to do so and give me thyroid. They did and to make a long story short, I graduated from GSU in '87 with a BA in Art.
Why blame the doctors for your burden