My baby has just been diagnosed with cld

Hi, my 6 month old has a hole in his heart, and we have just found he has chronic lung disease aswell, he caught a virus and is now on oxygen and doesn't seem to be able to come off it. They are doing numerous tests to find out what it is and if it can be treated. We as parents are really struggling to come to terms with this and was wondering if anyone out there has been through anything similar with a baby or child ? Thanks in advance as not sure where to go for support

24 Replies

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  • Hi Georgie, so sorry to hear of your baby's plight. I am sorry I have no input regarding lung disease in babies, but there is plenty of support on here and I am sure somebody will be able to help. Meanwhile you are all in my prayers, look after yourself too, he needs you to be strong Take care janx

  • Oh bless you, I'm sorry I don't have info for you but will keep you in my thoughts xx

  • Georgie89, I feel so for you, because you are helpless and having to rely on others to care for the most precious gift of your life. I wish I knew what to say to help your precious little boy. Hopefully someone on here will be able to give you some hope or at least some answers. Be strong for your baby, and take my hand. xx

    Jennifer

  • Hi Georgie, sorry I have no experience of babies with lung disease.I just want to say how difficult this must be for you & I am sending you positive thoughts & hugs. Love Margaret X

  • I'm so sorry for you and your dear little baby.

    Hospitals and their staff can work near miracles now.

    I can't recall anyone with little babies on the forum recently.

    I am racking my brains on who you can contact for support and so far I've only come up with mumsnet.co.uk (or .com) im sure they will come up with a contact.

    The BabyCentre.co.uk (or .com) might be able to suggest someone too. If you put the same msg on those sites, keep putting the word out there and you'll find the right people.

    The British Lung Foundation may have contacts too. Try emailing them - details above or they used to have a phone number 03000030555 available UK office hours.

    I am wishing you the very best outcome for your baby. Much love, Peege xxx

  • Peege has said everything I was going to. I've been looking through the list of communities on Health Unlocked and can't see anything that looks relevant to your situation. Phoning the BLF helpline on Monday is a very good idea. I'm sure they will have some good advice for you.

    I'm so sorry to hear about your baby's diagnosis. I do hope all the tests the doctors are doing will come up with some answers and good treatment for him. With love, Jan

  • My heart goes out to you both - it must be almost unbearable for you.

    Good advice to contact BLF. They are very knowledgeable both in paediatric and adult lung disease.

    You don't say what the lung disease is and maybe they are not sure as yet.

    If it is of any reassurance to you Georgie I developed a chronic lung condition at the age of 5 months old, following whooping cough and double pneumonia. Also whilst a child I was in hospital with a number of babies and young children who had holes in their heart whose surgery was very successful. That was in the 1950s and surgery was in no way as advanced as it is now. Their is also more advanced and improved treatment for lung conditions than in my early days.

    I am not surprised you are struggling so. I do hope your precious little one will be able to come off the oxygen soon and that following diagnosis your baby's health will improve.

    Stay strong and please keep in touch with us. We are here for you and rooting for your precious child.

    Healing hugs to the three of you.

    love cx

  • I'm so sorry to hear your baby is so poorly. My 9 year old son has chronic lung disease and we've found the charity chILD had very useful info specific for children:

    childlungfoundation.org

    They support children with diagnosed and undiagnosed interstitial lung disease.

    They also have a very supportive Facebook community group:

    facebook.com/groups/childlu...

    I hope you get some answers soon.

    Best wishes

    Ruth x

  • Thinking of you at this scary time and sending love and healing to your baby.

    Xxxxxxx

  • Georgie89, I'm so sorry to hear of your baby's illness. I don't have any knowledge of his illness either although my eldest daughter was born with a small hole in her heart which was a real worry; by the time she was about three it had closed. Cofdrop's words are reassuring . I am thinking about you.

    Bless you all and keep strong love. June xx

  • Hi Georgie

    I can't really add to the advice you've been given. Just want to send you a prayer and best wishes for your beautiful baby. My heart aches for you.

    Theres nothing worse then , not being able to help your children. We surely ache for them with every suffering they have. God be with you and may he guide your little one back to health.

    Rubyxx

  • Georgie, I can't add to what's been said. it must be so difficult and painful. Poor little boy. Sending love to you all, Sue x

  • It is always hard to see a child suffer,, and I can only send you both my deepest sympathy and prayers.

    It may help you to know that the footballer Aza Briggs had a hole in his heart which was remedied and he was able to play the strenuous game of football.

    God bless you and baby son.

  • BLF have a support group for Mothers of children/babies with Lung Disease.

    I hope this link helps.

    blf.org.uk/support-for-you/...

  • Thinking of you Georgie x

  • OMG Georgie! You must be feeling awful for your baby right now. We as parents worry anyway but when the big things come up its so much worse.

    I wish I could help in regards the lung condition or the hole in the heart but I have no experience in that area. I will look around and see if I can find any info for you.

    I understand the helplessness and fear as my own son became very ill himself at 13 months. Had a massive seizure at the swimming pool one day after a few days of me knowing he wasn't well and the doctors ignoring my worry. We were fortunate in that two doctors on vacation came into the pool just as I charged to the desk to tell them to ring an ambulance. They were wonderful and I can't thank them enough for their help.

    After a couple of months of tests he was found to have a tumor in his brain.

    My son was very poorly with poorly controlled epilepsy for many years. He lost all his development apart from one word. I lost a child while he was in hospital for two weeks and didn't say a word until my body discharged the feotus some three weeks later and needed a c&g.

    It took a long while for things to settle but by then he had little speech, little joy and his father was a bloody nightmare. He hated that his first born son wasn't perfect and was ...not nice to him.

    By the time my son was in a special needs school at the age of 3 things had been so unpleasant that in the summer I left my ex with him and my then 18 month old daughter.

    He went through numerous specialists and I always fought for him. I left nothing to chance and I talked back at doctors or specialists if I didn't feel they were pulling their weight.

    At the age of 11 he finally had an operation to remove the tumor in his brain. His seizures stopped and he began to improve. After another three to four years he was weaned, very slowly, from his Verizon's medications. Once this was acheived he started to grow.

    He is now 20, nearly 21 and he's doing very well. He still can't read or write very much (poor reception age to give you a pointer how low it is) but he's reached 5'8" and can communicate well. He'll never do so many things but at least he now has a good quality of life and he handles all my physical things that I can't do and I take care of finance and dealing with paperwork etc.

    I sincerely hope things improve and answers are found so the right help can ensure your baby's health improves. I can't say there's a magic wand for any condition and it can be very stressful but to see your child grow up with at least a chance at a future is what matters in the end.

    If you ever need to talk, I'm happy to listen. Don't ever think you are alone. Find out about local groups so you can talk to other mums with similar experiences and/or contact places like the British lung foundation who may be able to point you in the right direction.

    I wish you all the very best.

    P.

  • Hello Georgie89, I`m afraid I can`t help other than to say that I`m sending lots of love and positivity to you and your husband and especially your baby son. Fortunately Mumtosmileyface had some good advice for you. I do hope you get plenty of support, God Bless, Sheila xx

  • Hello - I am so very sorry to hear what your son has been diagnosed with and how ill he is at the moment. It must be horrendous for you both. There has been lots of good advise I can't add anymore. Sending you lots of love and the very best of luck xxx

  • Hi Georgie89 I'm so sorry to hear about your baby, my niece had a little boy 3 years ago he was born with 2 holes in the hart { due to Downs } he was 6 months old before they found out what was wrong with him. He was taken in to Birmingham children's hospital they plugged the one hole and they said the other small hole would heal on it's own.

    That was 2 and a half years ago now he spent 2 days in hospital and now he run's around with so much energy I do hope your baby goes on ok take care xx

  • My heart is just bleeding for you.

  • Hi thank you all ever so much for your kind words I will ring blf to see if they can help, it seems to be very rare what he has and we Won't know much more till his tests come back, thank you again

  • Georgie89, thanks for taking the time to reply. Take care and keep strong, we are all routing for you, your family and the little one and willing that each day he gets stronger. Thinking about you. June xx

  • so sorry to hear this, hope your baby can be helpedxx

  • Hello Georgie89, I have just read your post and I am sorry to hear that your precious little son is so poorly,,,,,the doctors will do all they can for him and you are feeling lost while all this treatment is going on,,and anxious for progress and to see his smile.

    The major children's hospitals will have information that might help you understand what is going on,,,Great Ormond Street, Alder Hey, their web sites might help,,

    as well as prays,,mine are on the way,,,,,also it may help to ask Arch Angel Raphael for healing for your son,,,,it may bring comfort to you and him,,,,,

    They treat hole in the heart with an operation,,I think,,,,,,the lung condition is so scary in such a little one,,,,the doctors will do all they can to get him better,,,ttfn from Karen.

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