Chronic Lung Disease.

Bri Lee - posted on 04/17/2013

I've been reading a lot about CLD and it terrifies me that my daughter will have it. How does one become diagnosed with CLD? Is it just from being ventilated for a long period of time? Hmmm, maybe I should google it more! So far her doctor hasn't told me that she would develop CLD so maybe I shouldn't worry!? It's hard not to hen you have a child in the NICU!

Veronica - posted on 04/15/2013

Hello Everyone

I came across this website and I am so glad a did because it is a lot of help. My son was born at 31 weeks and 3 days . He was in the hospital for a month and 2 days ,we finally got to bring our little one home last Tuesday (4/9/13). He too has Chronic Lung Disease and came home on oxygen as well as an apena machine(which he is on 24/7) & a pulse ox machine. I would love any advice !!

Heather - posted on 03/28/2013

my son was born 1lb 5 oz 23 weeks 11 1/4 inches long was on vent about 4 months got off went to cpap was that 3 weeks went to nasal canual for a month then they did his g tube and nissin surgery and was saying that he would get of the vent from surgery in like 2 days but was on it for 3 weeks

Carla - posted on 03/27/2013

Hi my son was born at 30 weeks and also has chronic lung disease , my problem is that I am a single mum and he never seems to get over a cold. Nights are terrible as he has a cough that clearly he struggles with and in turn is waking him up.

It has now been over two weeks of sleepless nights and I have taken him to doctor a few times each time saying his lungs are clear is their any mums , dads who can further advice me in what I can do as I'm physically exhausted

Yulianti - posted on 11/08/2012

Hi Mommies....



Born at 28 weeks weighing 770gram. Ventilated for 1 month was Chronic lung disease. Baby still in hospital for 6 mth++ and oxygen dependent. Now she have chest infection and pneumonia. Peads doctor said she will come home with on oxygen. She's only 0.5 litre before this air bubbling. I'm so worried to go home with her right now. There were so many bacteria and viruses out side. Its a hard time now for me cause i've 4 other kids at home. so confusing.....how can i handle my baby at home......please advice. Thank you.

Ann - posted on 03/13/2009

my baby was born at 25 wks and came home from neonatal after 3mths.he was on oxygen at home for a further 3 mths because of chronic lung caused by being ventilated.even now wen he gets a cold or infection he needs 0x in hospital.he suffers from asthma and a really bad night cough that doesnt seem to improve.the time he was on home ox were really tough so i admire any one goin thru the same. 

Eliabeth - posted on 02/23/2009

Hi Lizzie, all babies, even premies are different, not all premies suffer long term chest problems, and the premies that do, are usually the ones that needed ventilation at birth, my eldest was born at 36wks, when he was 4 wks old, he suffered from bronchiolitis, his lungs collasped and he was in hospitial for 2wks, and required oxygen, but has never had any problems since, my daughter, born at 39wks, suffered asthama as a child, but has now outgrown it, my 13yr old, had more illness and chest infections as a baby and toddler than my youngest Adam, and Adam is 8yrs, has chronic lung disease and is oxygen dependent, so as you can so, all so very different.

As long as your health visitor and doctor are happy with your little girls progress, i really wouldn't worry to much, do you have any relatives in your family with asthama? As this can be linked, Also, as your doctor says, she will proberly outgrow any problems as her body and immunity matures.

Lizzie - posted on 02/23/2009

Hi my little girl was born at 35 weeks and weighed a good 5lb 9oz she needed so special care and left hospital after 3 days.   Since reaching 5months she has been constantly wheezing and always seems to have a chest infection.  She now is on an inhaler and amoxycillin.  My doctor and health visitor just say its because she is so small still ( she will soon be 10 mths old and weighs 14lb) and her chest gets congested easily and its a case of waitng till she out grows it.  Is this a common thing in prematue babies? as my other two children have been full term and quite heathy.

Eliabeth - posted on 02/18/2009

hi Joanne, what does your daughters specialist say? Have u community nurses involed? It must be really hard as i guess she is active so she will also feel 'tied' to you by the tubing, so is not able to zoom off and play with other kids. Do you have a saturation monitor? Does your daughter have regular sleep studies? Sleep studies will help determine how her oxygen levels are during sleep, which is generally when they are at the lowest levels, speak with your daughters consultant about an action plan and what they think long term, and please please try bnot to worry too much, you have got your little girl this far, try not to place emphisis on age, when she is ready, she will come off the 02, is hard i know, sometimes i can't imagine Adam ever coming off his oxygen, as far as i know, he is the oldest ex premie to still be needing it due to lung disease, and i know exactly how u feel about other peoples reactions to it, take care xoxoxox, lIzz.  :D

Joanna - posted on 02/18/2009

she is only in 0.3 litres but  we cant waen her any lower. she started off in a litre at the start. i guess i just want her 2 be healthy. it is so hard because now she is at the age where she doesnt want it on and is asking why does she have to have it and her sister and brother dont, she is starting 2 notice she is different, itsalso harder now as she notices people that stop and stare.

Eliabeth - posted on 02/17/2009

Hi Joanna, your daughter is beautiful! don't worry to much about the oxygen and her age, my son was born at 25wks and also weighed 1lb 14oz, he also had BPD, (severe chronic lung disease) and although he is now 8 years old, is still oxygen dependent, although he is also severly disabled, so this makes it harder for him to come off the 02. He is on the 02 at night, when tired, poorly ect, but off pretty much most off the day, and has been pretty 'stagnant' for the last 3 yrs, he requires a minimum of 1 litre, though can go up to 4/5 lires + if poorly. is your daughter requiring much? or is she on a low amount? that will be an indicator of how her lungs are coping, all the best,  Lizz. :D

Tia - posted on 02/17/2009

Hi Joanna. My little girl was born at 26 weeks. She started off really well but then went sort of downhill. She also has chronic lung disease and is still on oxygen at home. She is now almost ten months old. I guess the hardest thing is dealing with what you never thought would happen. But the good news is she is still getting new lung tissue. Hopefully the end is in sight.

Heather - posted on 02/13/2009

My son was born at 25 week and also has chronic lung disease. He was on oxygen for the first year and then we were able to ween him off. He has ended up in the hospital a couple of time with cold the became pnemonia and need oxygen again for a few days. He is now almost 5. Don't loose hope. I was told by the peds doc that their lungs continue to grow and develop until they are 6- 8 years old. It take a strong parent to be a Mom/Dad of a premmie and u r 1.

Courtney - posted on 02/13/2009

Hi there

My twins were born at 24 weeks and my daughter was ventilated for nearly 2 weeks and she too has Chronic lung disease. They spent 5 months in hospital but my daughter came home on oxygen. they are now 13 months and Shyla is able to come off the oxygen most days mainly due to her not wanting it on but the doctor is waiting to give us the all clear as she still has a PDA. Apparently this and the lung disease can cause issues so heart surgery may be on the cards. Shyla is always getting chest infections and also has asthma. I took advantage of her good days and would just take her off for the day to try and strengthen her lungs and I found that as we did this more and more she became much happier and alot more alert. She started to interact with more people and really started enjoying play time. I hope this helps you but just know its tough being a mum of a premmie but you were chosen because you could handle the gift. It might be cloudy now but things will magically fall into place one day.

Laura - posted on 02/13/2009

Hi Joanna, First of all you have a beautiful daughter. My daughter was born at 28 weeks, ventilated for what seemed like forever, and spent her first 11 months in hospital, then the next year in an out due to various illnesses. She too had Chronic Lung Disease, I used to get so depressed looking at her x-rays in hospital, they were always cloudy and white instead of the perfect black looking picture that it should of been. She came home on oxygen, we had a machine in our lounge and a long piece of tubing that went all over the house. We finally managed to ween her off oxygen at 3 years old, it was a very slow process (I wish I could tell you it wasn't). I have to say that she has (touch wood) been remarkably healthy since then, which totally surprises me as I was expecting her to be sickly, like her baby years. She is now 12 years old, she has learning difficulties and attends a special school, but she is the happiest child ever and I am incredibly proud of her. I don't know if I have helped you Joanna, but please do not give up hope. I don't know what country you live in, we live in England, but my daughter was sent to Great Ormond Street Hospital and underwent a series of tests there to determine a possible outcome and I must say they were absolutely wonderful and gave me hope, maybe you could ask your local hospital to refer your daughter there or to your specialist childrens' hospital. I too, like you, ever doubted that she would be off of oxygen, when I look at her now I can hardly believe it. I'm sorry I've waffled on and I hope I've made some sort of sense. I wish you all the best Joanna and would love to hear how you and your lovely daughter get on. Take care. Laura