Trisomy 18 (Edwards Syndrome) Support Group
Trisomy 18 or Edwards Syndrome is a genetic disorder. Edwards Syndrome can result in characteristic physical abnormalities and significant developmental delays. For this reason a full-term Edwards syndrome baby may exhibit the breathing and feeding difficulties of a premature baby.
Hello everyone,
I have a 16 month old daughter who has Trisomy 18. She is doing relatively well considering her diagnosis. There are a few of us out there who are lucky enough to have our T18 children survive past 1 year old. I keep searching for answers to best help my daughter stay alive. I question things I need to look out for and I would advise the others to do the same. One question I have not found an answer to is whether central apnea is still a risk factor for T18 children that are over a yea old. If you have heard anything about this, please let me know.
I would advise other parents to screen their T18 children for Wilms tumors and hepatoblastoma. My daughter was getting screened for wilms every 6 months but a recent conversation with an oncologist on the national committee for wilms tumor said that that is not enough. Get your kids screened every3-4 months.
Hepatoblastoma is a liver cancer that is rare but there are a relatively large number of T18 that get this cancer which suggests that T18 makes children susceptible to this cancer. So please screen for hepatoblastoma as well. My daughter was diagnosed with Hepatoblastoma just before her first birthday and partly because I was an insistent pain in the doctors necks to scan her abdomin to investigate a small lump there which turned out to be one of 3 cancerous tumors in her liver. She has done chemo and surgery and she is doing very well.
There isn't much research out there for long term survivors of T18 but if we know what to look out for, we better the chances for our children and we can change the T18 statistics!
Good luck y'all!
I have a 16 month old daughter who has Trisomy 18. She is doing relatively well considering her diagnosis. There are a few of us out there who are lucky enough to have our T18 children survive past 1 year old. I keep searching for answers to best help my daughter stay alive. I question things I need to look out for and I would advise the others to do the same. One question I have not found an answer to is whether central apnea is still a risk factor for T18 children that are over a yea old. If you have heard anything about this, please let me know.
I would advise other parents to screen their T18 children for Wilms tumors and hepatoblastoma. My daughter was getting screened for wilms every 6 months but a recent conversation with an oncologist on the national committee for wilms tumor said that that is not enough. Get your kids screened every3-4 months.
Hepatoblastoma is a liver cancer that is rare but there are a relatively large number of T18 that get this cancer which suggests that T18 makes children susceptible to this cancer. So please screen for hepatoblastoma as well. My daughter was diagnosed with Hepatoblastoma just before her first birthday and partly because I was an insistent pain in the doctors necks to scan her abdomin to investigate a small lump there which turned out to be one of 3 cancerous tumors in her liver. She has done chemo and surgery and she is doing very well.
There isn't much research out there for long term survivors of T18 but if we know what to look out for, we better the chances for our children and we can change the T18 statistics!
Good luck y'all!
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
Stay strong
Natasha