So im curious as to when the earliest has been that CDH was diagnosed via ultrasound. When all the organs are fully formed? My angels CDH was diagnosed at 19 weeks and I keep wondering if we could have found it earlier.
So im curious as to when the earliest has been that CDH was diagnosed via ultrasound. When all the organs are fully formed? My angels CDH was diagnosed at 19 weeks and I keep wondering if we could have found it earlier.
Hi Dreisy,
I am so sorry for your loss. I remember your name as i believe we were going through losses at similar times. I hope you know it wouldn't have made any difference if you had found it earlier. I believe 19 weeks is probably the average time to find out and even still early. At 13 weeks we knew Berkley's heart was on the wrong side of her body, but we were told they wouldn't be able to confirm any diagnosis for at least another 4 weeks. So at 17 weeks we found out the devastating news of CDH, and they told us because of the very early diagnosis her case was more severe. It is very rare to be diagnosed this early from what I've learned. Again, I don't believe the time of diagnosis makes any difference. Every child is different and the Doctors really don't know anything until they are born. I hope you and your family are doing better. I know how hard this is. If you ever want to talk feel free to message me. Take care.
Hugs,
Brooke
My son wasn't diagnosed at all. We found out at birth.
Mom to Brooke-3/22/04- Braden-3/13/08-RCDH diagnosed at birth- treated at CHOP- CDH repair at 1 day old- home on day 12- Orchiopexy for undescended testicle (4/13/09)- Myringotomy with tubes bilateral (ear tube surgery-7/6/10)
North Carolina State Co-Rep http://i291.photobucket.com/albums/l...bon-braden.jpg Braden's video http://www.onetruemedia.com/shared?p...edium=text_url
(((HUGS)))....each baby is so different and I really think it depends on the ultrasound tech and doctors doing the scans and if they are experienced and really know what they are doing and seeing on the scans. I really don't think diagnosis and when it is caught, plays into how well a baby well do. So many have the halfway ultrasound and no others and that is why CDH is missed so much until birth. The techs. or doctors miss it.
You do see parents finding out around 11-13 weeks, but it has to be a very good tech./doctor and they really know what they are looking at. The diaphragm is fully formed between the 7th and 10th week of pregnancy. Babies are usually so small it makes it very hard to see this birth defect early. Most are diagnosed at the midway ultrasound if they are going to be caught before birth.
Tracy - mom to Ian, LCDH diagnosed at birth, 4/3/04. Ian was born at 36 weeks, spent 53 1/2 days in NICU, 7 days on ECMO, surgery was on day 5, 29 days on a vent, 23 days was an oscillating vent, 546 days on oxygen. Inguinal right and left hernias and undescended left testicle surgeries were done on day 48. Currently has heart related medical issues and exercise induced asthma, but is one happy, happy boy!! Also mom to Cole - 13, Shane - 9, and Toby - 4. CHERUBS Parent Advisory Board Member and Co-Chair, Volunteer Co-Coordinator, and Wyoming State Representative.
email: tmeats@cherubs-cdh.org