Hi Tanama,
My very good friends grandson was born 18 days ago also with one lung, dextrocardia and a compressed trachea. We are from Maryland and her grandson was born at one of the most so-called esteemed hospitals in the US. I say "so-called" because the doctors there pretty much told my friend that they had no name for this rare diagnosis and to pretty much place him in hospice to just die on his own. As you know we are all furious and definitely feel helpless. We are looking for another hospital and doctors that specialize in these genital disorders to hopefully offer a solution of treatment, but we are pretty stunted on where or how to start looking. So, I am praying that you can send me as soon as possible the name(s) of the doctors and hospital that treated your son. I find it a blessing to see on these blogs that this is a treatable condition you can survive from. I thank God that you all are sharing your stories and thank God that folks are surviving. Again, thank you with loving prayer, Chris.
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I am going thru this now with my 13 month old son. He is missing his left lung, left kidney, and has the issues with the trachea and had a cleft hard palate which has been repaired. We live in West Virginia and have absolutely wonderful doctors in Roanoke Virginia at Carilion Roanoke Memorial Hospital. I would be happy to give you more info about his doctors if you are interested. My prayers are with you.
Sarah
I am 32 years, and I was born with only my right lung! Until I saw this I was under the impression I was the first baby to be documented surviving past two weeks born with one lung. That's what the doctors told my folks at least and as far as I was told they used me for medical research to see how I made it until I was almost one before they caught it. And to see how they could help others. I had heard they found a lady in her 30s shortly after after she passed from unrelated issues. I am happy to see that soo many babies have made it, it's awesome!! Really glad to know I am not actually the first!! I mentioned the lovely lady that it was discovered in her autopsy to mention this, she went her entire (short, but entire) life without even knowing. So there's to hope that the side effects are just as inhibiting to you all! My advice, though it's obviously becoming more common, so this may not effect you, keep a file with their/your medical history on you if you are going out of town or are in a situation that you may need to see a doctor that isn't your normal. I have been refused care a couple of times being told "you don't have a scar and being born that way is impossible." So it's a small thing just in case you need the visit. I will say all our cases are individual, we will all have so many other factors at play. But with my experience I have had an amazing quality of life, I am very grateful they figured it out and saved me at about one. I am and always have really active. The sound of my breathing worries others but I keep going and am fine. They are even impressed to find out I only have one lung and kept up:) My case in particular came with asthma and apnea. If they are having trouble breathing some quick tips, hands on your head (seems to help, don't know if it does physically or takes your mind off it), count at a normal pace and try to match your beaths, and a big one with asthma is to know that while asthma is very real a big factor is the panic it very deservingly induces. Remember it feels like you can't breathe in, but the real problem is that it inhibits your ability to exhale fully to refill your lung with fresh air, so concentrate on a full exhale rather than panicked inhales. Yes it does take a few years before you can communicate this to kiddos. My other tip is to watch out for respiratory infections, just get the antibiotic and you'll be fine. Without insurance and doctors help I learned it can and will become walking pneumonia quickly, making that $4 generic antibiotic priceless, so don't try to tough it out, just sayin. And the big problem I've had is that I have outgrown it before, easy fix: steroids! I love steroids! They're why I'm alive. My parents found out I only had one lung when from 6months to about a year old I had a perpetual cold and eventually was referred to Texas Children's Hospital in Houston, Tx. There they ended up doing Xrays and !!!! Steroids, breathing machine and treatments for the first part of my life and I was fine, promise. According to my folks after the initial discovery the hardest part was keeping toddler me still for the 15min treatment. When I have outgrown it again we discovered it the same way, I get low on energy and when I realised I had been fighting colds more months on end I knew it was time to find a Pulmonalogist. Who was amazing, prescribed me one in house same day breathing machine treatment, pill steroids and that stupid round purple powder pack. That was at about 19. I'm 32 and haven't had to see him since. Age is gonna be a factor before long, but my life till now has gone smooth and I'm set up for that age thing really well. I think it's time for more steroids, but I'm going strong. Long story long, learn what the little signs mean and you'll catch it quick. It simply makes you sound pathetic when you have a cough or run, but other than that it's nothing! Take care of colds quickly and if they persist unexplainably then go to a Pulmonalogist instead of your normal primary care. It's okay to feel like you're overreacting and getting help to soon, it surely isn't gonna hurt a thing to know your still healthy. It's long winded but I didn't know what could help, hope something does! And I've never gotten to share handy tips! Hope you all have happy healthy days ahead!! So excited to know you exist!
PS expectorants are amazing, you wear yourself out trying to cough stuff up on your own and I'm getting convinced I can't without aid. Mullein is an herb that is a natural expectorant if you want an alternative to chems. It can be made into a tea smoked (which I refuse to try) or made into a tincture. I personally purchase a tincture from an apothecary and it works wonders. About the most disgusting thing I have ever tasted in my life, but it works so well. Best well wishes!!
She's got 24/7 oxygen.
We live in the Netherlands and here the docters say that this is very extraordinary. one lung is more often, but this in combination whit one pulmonary vein is very special.
Or is there someone in america who has olso this?
And does Anyone known a good doctor that van give my little girl a live without oxygen?
Greetings from the netherlands.