By Becky, Congenital pulmonary lymphangiectasia, United Kingdom, April 14, 2018
Hi please can anyone help, as a family we are desperate to find help for my 7 month old niece Connie Warren. She has been diagnosed with CPL - Congenital Pulmonary Lymphangiectasia a rare lung disease which has been present since birth but missed by doctors/consultants. She also has hypoplastic right heart syndrome which she has recently undergone open heart surgery for and which has worked perfectly but she wasn't getting better and now this diagnosis has been made. She is currently in LGI who say there's nothing that can be done but they don't have specialised Lung Unit, she's there because of her heart. Her lungs are getting worse by being stuck on the ventilator. We really need help to get her moved to somewhere that can help her and who know what to do for her, possibly also by using a less invasive way for her to breathe that doesn't damage her lungs more.
Please please has anyone had any experience with this condition or point me in the right direction.