Trisomy | Down's vs Edward's vs Patau's Syndrome 

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@@hussainbiology my daughter was born with a fused skull suture. I gave the medical scientists permission to use her DNA. They don’t get many people to donate but I did because I hope what they can learn from her DNA can help other people.

@@trishayamada807 Oh Great... It is very rare now a days to contribute for a Medical cause that too when u had to out forward your daughter.... Commendable..♥️

@@hussainbiology I sincerely want to help and to give back to society. If people had not donated blood and plasma my baby would have died. They are my heroes and I will never know their names.

@@trishayamada807The Almighty has bestowed u with lot of strength ....❤️❤️

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@@hussainbiology w wzz , ,, ,

@@najmasayeed3687 wwzz ???

InshaAllah

thanks for appreciation..Glad to know that it helps

You are welcome

God Bless u and give u strength at times...

Ma'am aap aur baby thik ho?

Shukriya boi,,,,,,,

Recurrence is pretty rare less than one percent.

Can you please tell me is everything alright?

No dear , it is yet to be made.

Hello... same has happened with me... can you please update about your baby?

Nothing.....This is random

It's not always random. I lost 4 babies. Two miscarriages at 8 and 12 weeks. Then lost a fullterm baby, 3 days past her due date. She weighed just under 8lbs (3.6kgs) and the post mortem could not find anything wrong with her so they put her death down to cot death, but in the womb. Then a year later I had a son, born by elective caesarean section at 37 weeks because he was breech and they didn't want me to go fullterm because of what happened to his sister. I knew from birth that he wasn't right but no one would listen to me. Six different doctors checked him out before leaving hospital and none of them spotted anything wrong with him. My health visitor dismissed my concerns when I raised that he wasn't meeting his milestones like smiling at 6 weeks. She said he was early, he'll be a bit behind, stop worrying, and eventually I had to keep my concerns to myself because I was afraid they would think I had post natal depression. Then one day when he was 5.5 months old and had a cold I noticed his breathing looked quite laboured and my motherly instincts once again made me concerned that he wasn't looking right so I decided to take him to the baby clinic for a check up. We left home and when I glanced down at him in his car seat and he had turned purple. Long story short, he was rushed to our local hospital where they worked on him for 5 hours before transferring him to St. Thomas's Hospital in London where they worked on him for a further 5 hours before coming to us to tell us there was no more they could do. They said they would phone GOSH, Great Ormond Street Hospital, to see if they has a bed and fortunately they did. Within 45 minutes GoSH had him intubated and they put him into a medical coma for 10 days to let his body recover. Then he was transferred to a respiratory ward where the genetics team came to look at him and they took some bloods. A week later we were called into a meeting where they told us our son had a rare form of Edwards Syndrome/Trisomy 18. They told us they only knew of 6 other babies in the world who had this particular form of Trisomy 18. Of the 6, 5 died between 6-8 months and only one lived until 13 months. They told us he would never walk or talk and that he would have no quality of life and to take him home and expect him to die at any time. They were that blunt. Our son lived quite happily for another 10 months. He was never in any pain, was not on any medication apart from a food supplement. He hated his NG feeding tube and pulled it out so many times they left it out as he was doing so well with his Haberman bottle. He loved his music classes and was at his happiest when he was at special needs swimming submerged in the warm water where he was so relaxed he used to sing to himself. He was a complete joy to be around and was surrounded by love as everyone who ever met him adored him. Sadly the doctors were right and after he had an epiletic type seizure one night, his heart stopped 3 weeks later and he passed away. Our little soldier was off to join the angels to be with his siblings. We had spent 10 years trying to have and losing babies and no doctor had ever suggested genetic testing for us during this time just telling us we were unlucky. Our sons geneticist asked us after our son was diagnosed, if we would like to be tested and we said yes as we were looking for answers and we found out that my husband was a carrier of this condition although he was not affected by it. So a simple blood test could have saved us from 10 years of heartache. Having said this, I do not regret a single day of the time we got to spend with our gorgeous son, but I now say to any couple who are having repeated miscarriages or stillbirths to ask for genetic testing because healthy babies do not just simply die. I believe a lot of cot deaths are down to undiagnosed genetic conditions. I just wish doctors were more understanding and more forthcoming and that they would listen to mothers concerns and take them more seriously as no one knows their child better than the woman who has grown them inside her for 9 months. Never ignore a mothers instincts when she says her child is not right. Hope this helps others to push for genetic testing

@@jmk1962 Thanks for sharing your story. I am so sorry. I really feel you cause i went through what you have been through. I have lost total of 4 babies. Two miscarriages and two was born a live. One was two days old with Trisomy 18 and the other one was two months old with Trisomy 13. It was the most darkest days in my life when I lost my babies to these horrible diseases. I have been pushed off by the doctors when I ask them, if this can be genetic issues. Their answers, “ No. It’s just a random thing”. It was 2019 when I lost my last baby. I still suffer to the point that I am scare to get pregnant. Please let me know which test should I ask them to do. Again I am so sorry about your babies. God bless you!

@@cottxncaxdy345 - Hi, so sorry for the loss of your babies. Hugs to you it is a horrible time and not knowing why is the worst thing. Your story is so similar to mine, but what shocks me is that this is still happening in 2019 as I lost my two last babies in 1998 and 1999 so I am shocked to hear that doctors are still not doing genetic testing 22 years on. You should insist on speaking to a geneticist. With your history of losing 4 babies, one to Edwards and one to Patau's I would say that is a definate cause to do genetic testing on both yourself and your partner, as the chances are one of you is a carrier like my husband was. It is just a simple blood test where they look for markers and when they know what they are looking for it makes it even easier for them to do it to rule it in or out. Saying it is just a 'random' thing and that you've just been unlucky is not acceptable as you have lost 4 babies already, two with recognised genetic conditions, that's not random under any circumstances and you need to know to prevent further heartache. A good geneticist should support you with this. I don't know where you're based, but have you heard of the charity S.O.F.T? It's a charity that supports families of babies who have Trisomy 18 & 13. They have geneticists who work with them who are most helpful and they have loads of information on their website, although the stories of the babies can be heartbreaking, especially as your losses were so recent. www.sort.org.uk Do ask to speak to your local geneticist and insist on yourself and your partner being tested because if you don't you will never know and I do understand your fear of becoming pregnant again in case the same happens. A blood test could confirm if one of you is a carrier. If it is your partner, then you could consider other options like donor sperm, or if it is you than maybe you could look at adoption. There are always other options, but if you are not tested you will never know for sure and that is worse than knowing IMO. We did go on to adopt two daughters 2 years after our son died as we were both 40 and really wanted to be parents. It's not an easy process but is so worth it. Wishing you all the luck in the world from someone who had been where you are. xx

Hlo sis what happened now?

it is absolutely normal... Sorry for being late

Thank you sir. Really normal. But my doctor suggested NIPT test. I am so scared sir.

@@ansarneesha2033 If doctors have advised then u should go for it... It is simple test and risk free...... ( But why doctors have advised ??) do u have any genetic history of chromosomal abnormalities??

Ok sir. Thank you

@@ansarneesha2033 most welcome......Allah bless u

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bilkul

@@hussainbiology mainay pronunciation se hi pehchan liya , me too "kashur" ❤️ from reasi.

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Hi..That trisomy is very rare that is why i haven't discussed it here...