First of all I'm really surprised there is so many people with that condition. I've never heard about lymphoedema until my son was born.
There was no complications during pregnancy, everything was normal and perfectly fine. My little one was born at 6pm and looked very healthy. 6 hours later his left leg has started swelling slowly. I thought it was because of name tag being too tight so I removed and hoped for swelling to disappear (see picture)
Few hours later his entire left side got badly swollen including face, hand and testicle. So many doctors came to check him out but no one could say what's happening. For some reason his swelling has cleared from other areas except the left leg.
Long story short: my son is 5 mths old now, had meningitis when he was 4 weeks old, had million scans done to his leg, brain, kidneys, groin etc.
We are under St. George's Hospital and Dr Mansour will be looking after him. We've met Mark (absolutely fantastic man!) who organised compression stocking for us.
My son had a blood taken for some genetic tests but we haven't heard anything yet and it's been over 4 months already. He will be having MRI in 2nd of January. How does it look like? What can we expect? I believe they will have to use an anaesthetic?
Has any of you ever heard any stories about newborns with lymphoedema? Because everywhere we go doctors say it's a first time they see such a young person with that condition.
I would love to meet up with anyone to have a chat so you can tell me what to expect and how to make it easier for my son. I'm terrified about how his life is going to look like. His leg is massive compare to the other one despite him wearing comp. stockings and me doing the massage