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Hi I am Tanya and I had my beautiful princess 14 years ago and she was born with a left side CDH was full term and had pulmonary hypertension among being on vent from day one and she was placed on EMCO and had her CDH surgery on it and then was removed she was in the hospital for over 6 months and she has had many surgeries and problems she was doing really well and we noticed she wasn't showing signs of becoming a lady and she was still small so now we find out she has Turners and her puberty gland is non active. They are saying the gland is from the stroke she had when on EMCO so I'm reaching out to others mom's any problems or other things from EMCO just now showing up. Thanks
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  1. Laura D's Avatar
    I wish you and your daughter the best. My son Joshua just turned 19 and has quite a few issues. He wasn't on ECMO but has had lots of challenges. He really inspires me with his perseverance.
    You are a marathon Mom to go through this with your daughter.
  2. Morgan Nuchols's Avatar
    I was born with Severe Left CDH by age 8 was first diagnosed with PH but learned I grew up with it. I'll be 23 tomorrow. My PH right now is stable. My last CDH diaphragm repair was 9 years ago, had rod placement in 2006 then in 2007 hole opened up and intestines got lodged. I was 12-13 then had to learn to eat age 13 1/2-14 years old. I was only on ECMO for a week when I was born.
  3. Morgan Nuchols's Avatar
    I've been 4ft 10-11 inch tall for 10 years since my rod placement. And maintaining my weight in the 100-103 range. From my short height and PH ( can't be below 95 pounds or above 105 pounds.) Working on more high iron foods to keep oxygen in blood stream, for a year now since I got off iron pill and water pill, maintaining both for a year by my self.