born with only one lung

I have read that there is some genetic link to lung atresia....specifically right lung and in females. Not sure how much research is behind that. We have traveled with my daughter who is only 6 month via air....no problems. The only concerns the doctors had was that her oxygen saturation levels were ok.

My daughter is 8 years old, also born with one lung. She has her right lung, it is large and football-shaped. She also had tracheal reconstruction at 4 days old for her severe tracheal stenosis. Anyone else have a hypoplastic (small) thumb on the same side as the missing lung?

Also, I went to the Yahoo groups to sign up for One Lung Wonders. I have been searching for years for others' stories with kiddos like mine, but gave up awhile back. So glad a friend directed me to this site. Thanks!

Hi There

I was born with 1 lung and also dextracardia, I am now 19 almost 20 and have lived a normal, helathy, active life, i played netball, teaball, recieved trophies at school carnivals etc... it honestly has not affected me at all. I came accross this blog becuase I am looking at if my lung will stop me from going skydiving next month - turns out, It wont.

for any worried mum out there, there may be some asthma or wheezing when we are little, but otherwise it doesn't effect us at all :-)

Hope this makes you feel a little better :-)

My 7 week old is in the hospital for the second time. She was born with Dextrocardia, only 1 lung on the left side. Found out she had anualar pancreas where the pancreas grows around the intestines and causes and obstruction. She had malrotation of intestines, no spleen, and her apendix was in the wrong spot so they took it out. We are in the hospital with some sort lung issue ( lot of fluid in there) not sure if reflux, infection came back negative for all that they tested. She is intubated right now. Poor baby. Anyone have this ... they said it was heterotaxy "like" issues... but genetics said nothing was wrong.

Hi, My son was born in November 19,2010.He was doing just fine until the third day were he had to be connected to the ventilator. Now the Xrays show that his right diaphragm is not working (paralisys) and he is doing physiotherapy but he is already more than 2 months in the ventilator. My question is....Is he ever going to leave that machine? when? if the problem is from the central brain, is he ever going home with me?? Please, I want to hear from someone with a similar experience because if he never recover that side of the lung....can he breath alone with one lung and with out the ventilator?? When????...thanks!

My daughter is now 16 months and was born with only 1 lung (along with other issues). Lung-wise she is doing great. There seems to be little limitation in what she can do having only 1 lung (except for just sweating more and breathing heavier from low energy activities). But she does NOT let that stop her. She climbs on everything, climbs the stairs in my house, jumps on the bed, runs around, etc, ALL day long. I was discouraged and hopeless when she was born but now I see the hope and strength these kiddies have. You can defintely live with 1 lung......just have to take precautions because obviously no "back up" should that lung get compromised. She has gotten a few colds and the start of pneumonia one time but that has been it over the year.

zsara,

Hi my grandaughter was born Feb. 11, 2011. She was born without her right lung, along with duodenal atresia, anal atresia, and malrotated gut. I am curious of your daughter had any issues growing when she was first born. My angel breathes on her own, has had surgery to fix her duodenal atresia, she eats but gets tired easily. She is not growing consistently and I am concerned. Would like to know if anyone has had similar problems, has maybe some advice, or could share what their docs did besides a feeding tube into her stomach. I am glad to have found this forum

Hi emmas grammie:

My daughter had some growth issues initially until she mastered the art of feeding. We added oatmeal to formula and that seemed to pack on the pounds. She still is tiny however eats like a man! She is always low on the weight scale but has been increasing on her "own chart". However now that she is moving around so much, she doesnt seem to be putting on too much weight. The doctors do not seem concerned. My daughter was going to get a feeding tube shortly after birth, but after surgery to help her breathing, she no longer needed the feeding tube because was able to eat-breath-swallow simultaneously post surgery. My daughter gets tired out from chewing too much and when she was on bottles she defintely tired out from sucking. We went for a larger nipple size so the flow was a little faster in order to get the calories in without her tiring out. Please let me know if you have any additional questions. Congrats on the birth of your grandaughter. Please join onelungwonders on yahoo groups.

I am pregnant with a baby who doesn't have a left lung, the heart has moved into the cavity where the lung should be. I have been incredible upset since finding out and can't believe I only just now have found this site. It gives me hope that the prognosis isn't as bleak as I thought. Does anyone have a similar situation where the heart moved into the lungs place? My doctors say that there is a risk of scoliosis and/or pulmonary hypertension. ANY insight from those going through or who have gone through this is welcome!

Mama Halifax:

My daughter is missing her right lung and therefore her heart is somewhere under her right armpit.  Her heart functions fine....just in a unique position. . Her cardiologist monitors her for pulmonary hypotension (pressure is a little high but only mildly).  As of now she has a mild tilt of her body which could be because of the empty cavity or because she also has fused vertebrae issues.  She has other medical diagnoses as well.  My daughter is currently 18 months and is doing great.  No one would know that she has only one lung.  She runs, climbs stairs, just started a sports class, etc.  She sweats a little more than most kids and breaths a little heavier but is fine.  We were unaware of her issues prior to her birth...so you are ahead of the game!  :)  I was terrified in the beginning; thought I would have to keep her in a bubble, etc.  Not the case.  Please search yahoo groups for a group i started called onelungwonders.  You are NOT alone.  Please ask any other questions you have!!! 

My daughter is 2 months old... when I was about 28 wks pregnant my husband and I found out our daughter's left lung never developed and her heart is on the side where the lung should be. So we knew what was going on before she was born. So far she's doing real good... she also has some minor heart issues like ASD & VSD... and the artery that goes from the heart to the left lung is MIA. Doctors say that both her ASD & VSD are quite small and the possibility of them closing on their own is very high. And thankfully the airway to her left lung is closed off all on its own which rules out the possibility of an infection to occur. All of this has been very confusing and terrifying sometimes. I wish I found all this before she was born... I've spent many days worrying about the outcome of her birth and as she gets older. It's very comforting to hear about all these stories and the amazing outcomes. It eases my mind. Thanks for the comfort.

Guest,

Your daughters situation sounds exactly like the situation we find ourselves in, except that our baby has not been born yet. We know that the artery to the left lung is also missing and that the heart has shifted to where that left lung should be. I am wondering what the minor heart issues like ASD and VSD mean? Information is difficult to find but it is out there mostly through forums like this. I know how you feel. Hang in there.

 

Hi Guys

 

This is an old post but for anyone still interested please read.

 

My name is Shelby, 20 (almost 21!! yay) i live in Australia and I was born with 1 lung, my heart on the wrong side (dextrocardia) and also uterus didelpus (2 of all my lady parts..whombs cervix's etc)... so i am a bit of a mash up of various body parts! haha

 

and no - mum wasnt a junkie! haha but I like to joke about it and say she must have been!...

 

from what mum told me when I was born i was in and out of hoospital for the first few months...but since then i have lived a happy, healthy full likfe like a lot of poeple born with 1 lung!, i had asthma as a kid..like most kids and always carry my ventalin, just in case... other then that I am fine! i am perfectly capable of running and excersize but the 1 lung was always a good excuse to get me out of sports classes! so it can be an advantage!

 

the uterus didelphus was discovered a few months ago.... so cant really update on that 1 just yet, still leanring all about it myself.

 

I would love to speak to you if you had any futher questions you would like to ask if you yourself has the same thing i would love to swap stories...or if you have worries about a son or daughter more then happy to talk about it :)

 

Hope this post helps somone out there :)

Shelbs

your friendly neighbourhood One-Lunger!

 

Shelby,

 

Could you please do me a favor and join the onelungwonders group on Yahoo?  My daughter is nine, and I would love to hear more about growing up with one lung.

Hi There

More then happy to answer any questions or just meet a fellow one-lung-wonder :)

Do you have a link to the group? I have tried finding it before but with no luck!

Thanks

Shelbs