born with only one lung

Hi Mama halifax,



You must've had your baby by now and I hope all is well. My son was born with only his left lung. Like you it was discovered during the 20 week scan as his heart had moved into the centre of his chest. His heart is now on the right side and his left lung is pretty large.



I just want you to know that my son is well. He's 5 years old next month and lives a normal active life. He also has a narrowing in his trachea, so when he gets a cold his breathing is noisy and a little laboured, but he's great, doesn't let it get him down and lives a normal healthy life. Don't get me wrong it's not all rosie, there are times when his breathing is so rattly it echoes around our house and he tries to keep up with other kids and it breaks my heart that he may not be able to compete on a serious athletic level, but then I rationalise it because it could've been so much worse and it's my expectation not his. He thinks he's the fastest boy in the world.



So that's how it is now. I don't want to worry you unduly but our first year with him was pretty scary. He went through intensive care (ventilated due to respiratory failure) three times. The first time was at three months old he got a severe case of bronchiolitis and got very sick. His breathing got laboured and he became floppy, so I called an ambulance. Within 24 hours we were in intensive care and there we stayed by his bed side for 2 weeks. I don't want to scare you but I think you should be aware that the first year as the baby learns to cope with colds and a serious respiratory weakness it can be tough. As a parent it's hard because we're supposed to accept that children get cold/flu bugs and not get annoyed when people bring their sick kids round the house. I remember feeling so anxious with friends with kids, who'd come round and sneeze all over my baby. Within a week you can guarantee we'd be back in hospital (I lost count how many times we arrived at A&E in the middle of the night).



At 12 months he had an operation called an Aorta Pexi in which the main arteries are moved away from the airwaves to relieve pressure on the airway. Having your heart on the wrong side can cause some plumming complications. Actually my son's trachea is still narrow and it is unclear if he was born this way or if his trachea was damaged during an emergency intubation.



Anyway, now he is having a good life. I just want you to know that in the end my son is more than fine. He's beautiful and charismatic. In fact being in hospital made him very sociable and very comfortable with strangers. I get very emotional when I think about what we went through. Especially the first time in intensive care I really thought we were going to lose him. Stay strong and don't panic and don't feel like you are being over protective because your baby has a weakness and you do need to protect him/her, but also remember your baby does need to get ill and his/her body does need to learn to cope. Being born with one long need not be fatal and there is more than a good chance he/she will be fine.



By the way the very first post on this forum is from my aunt who looks after him a lot. I had no idea she'd written the post until recently. V. funny

Tanama:

 

My daughter also had an aorta pexy shortly after she was born to correct a compressed trachea.  So nice to find someone else who not only know sthat surgery, but has a child who has had that done.  My daughter is almost 2.  So far, knock on wood, she hasnt had too many illnesses but I am defintely anxious about her getting sick often.  My daughter is also missing her right lung and her heart is somewhere under her right armpit.   Thanks for posting.

 

Liza

Hey can someone plz tel me what is the medical term for "Born with a single lung"?

right or left (depending on which is missing) pulmonary agenesis

Hello all. First I would like to say thanks for all the great information about these beautiful and special children. My son was born with Tracheal Stenosis as well as missing right lung and dextrocardia. He just had a slide trachealplasty to fix the stenosis and is now in recovery. We are scared because he is having issues recovering. He has come down with atelectasis. Has anyone experienced this?

Do you have any problems with scoliosis because of the empty cavity of the lung you born without. I have had open fetal surgery where they had to remove the left  of lung of my baby and the doctors said that it was a concern of theirs.

My daughter was born with only one lung. Scoliosis is something we were told we would have to pay attention to and monitor over time. She is 2 now and has very mild scoliosis but she does tilt towards the side with the empty cavity. They thought it was scoliosis as a baby/toddler but I think it is just her anatomy. Not overly noticeable. Search yahoo for one lung group for more support.

Hi everyone. My name is Debbie and I am 63 years of age. I was born with one lung - the right side, and dextra cardia. I have, and am, living a full and wonderful life. I have never been in contact with anyone about this before and just want to connect with other people with one lung and reassure parents that it is possible to live a long, happy, active, healthy life with this condition. I grew up with a lot of fear because I was surrounded by unsure, frightened adults. So if my story helps reduce that fear for children and parents alike it can only be an improvement for both.

Debbieddg:

You brought tears of hope and joy to my eyes racing your post! Please search yahoo groups for one lung wonders. There are about 15 of "us" in that group and I am certain many parents on there would love to hear your story!

Hey- My daughter has something called heterotaxy- which a mix of many things for many people. But I wanted to let you know she is now 20 months old. She also has had a hard time gaining the weight like the "Charts" want her to. We have avoided the feeding tube because our pulm doc didn't want to cause a "beer gut" and make it harder for her to breathe. My daughter gets tired easily when active, but comes to me when she seems to have had it! Calms down and goes back be active. When she gets sick we have now been given O2 and suction since we kept ending up in the hospital for every little cold. She didn't have a spleen visable at time of her surgery so they take her fevers quite seriously.. Where do you live? How is your girl doing now?

My son, Evan, was born with Primary left lung agenesis. The lung is doing great- hyper inflated to compensate for missing lung. He's never required oxygen and has never been intubated/on a ventilator. He has some tracheal stenosis that has proven to be more of a medical hurdle than just having the one lung. He is 5 1/2 now. Evan has done gymnastics for 2 years now to help build his core strength and is starting his 3rd season of Tball. We've done swim lessons and he holds his breath to go under water. We've flown on airplanes and been as high as 10,000 feet elevation. He does awesome! He breaths a little faster than kiddos with two lungs and sweats easier, but it's all still proportional to his level of activity. Because of not having the left lung, the muscles in his left chest develop differently that can make him prone to scoliosis. We'll cross that bridge when we get to it, but we make every effort to strengthen his left side to keep him "evened" out. My husband wants to teach him to hit left handed for added strength. LOL. Evan is a smart, loving, thoughtful little boy who surprises us every day. He's scared us a few times, but we are all the stronger now for that experience. There's hope. The condition is so rare and so little is know, let alone long term prognosis. It's wonderful to find others that share our commonality. We found a woman born with only one lung on Facebook in her early 30s, doing great, and she just gave birth to twins! She was the first to respond to our inquiries. We can only hope to return that generosity and "pay it forward". May God bless you all and guide the hands and hearts of caregivers to all our "one-lung-ers"!!!

Hi, I'm Diana from Romania and I've just found this blog. I'm pregnant with twins and one of my girls appears to have only one lung and one kidney, more exactly the left one. We are not sure whether the left lung is smaller or it isn't at all. I am 21 weeks pregnant and I will repeat the ultrasounds at 24 weeks pregnancy. I am very scared whether my girl has other disorders which can not be seen right now or if she will need surgery...

They will be born through cesarean at the most 34 weeks and I am afraid if the left lung of the baby will be enough for her to breath considering its premature condition...

I'm glad I've found you and I'm glad your stories are success stories. I hope I'll write you my own success story, if God helps me.  

My wife was born with one lung and a very narrow trachea (unknown until 3 yrs ago) The trachea has stenosis and was injured recently when trying to put her on a ventilator. She will be 70 this winter and has had many good years and some bad ones. Next week she is being operated on to try to make the trachea work better.

sadly my daughter had this same condition 22 years ago she only lived to 6 months doctors operated on her trachea but wasnt successful. the doctors didnt diagnose until she was 2-3 months old as i was concerned and knew there was something wrong with her since she was 2 weeks old., they were saying there wasnt anything wrong with her.she also had a dysplastic left kidney,the doctors said i was over reacting until they found her condition.

Hello every one s i am male and i have also a condition with you with your friends nephew etc.. i am 21 years old right now i have one lung and my heart is in Rigth Side When i was a child i feel that i am a chosen one :) because i felt that i am different with my play mates friends and cousins etc. when i was a child a am prone in many sickness like pneumonia ,hard breathing and so on connecting in my lungs.always when we are in hospital for a chekup all of the nurse was so proud of be because they cant believe that some one can leave with one lung :) when i was in teen ager i was prone with a friend he is a change smoker also a liquor drinker and also sooner i was became that too. i am a change smoker in more that 2 years with one lung and right side heart and i didnt notice that i am very abusive in my health so thats why i manage may addiction in smoking and liquor and now i am not take a smoke anymore some times i drink but not much. i feel that God Blessed me very well he didnt let me to feel that i am very different to his many creation i am glad that i am still a live living with no problems :) i know that your children's ,nephew,friends are also blessed to they are chosen one like me please tell them that i am glad to know that i am not only that one that have this conditions :)