When you hear the words "lung defect," your heart sinks and your world may crumble, at least for a little while. At some point, after you received that specific diagnosis of Congenital Lobar Emphysema, you probably started to search for as much information as you could possibly get your hands on. But then you discovered, like I did, that there's just not that much information out there about CLE.
Maybe you bring your baby home after his emergency lobectomy, only to find that the internet can't tell you what his recovery time looks like. In fact, he has more in common with a 60 year old smoker than the other babies you know.
Or perhaps you're facing the big decision of whether or not you should keep the lung. But Google won't help you with that one.
In creating this blog, I wanted parents to have a place where we can share our children's stories with the goal of encouraging and informing each other, particularly the parents of new little ones who are diagnosed each year with CLE.
We started as a group on Facebook. I can't tell you how thrilled I was to discover the Facebook Group. It amazed me that I could finally talk to other parents about their experiences. The Facebook CLE Support Group has been a goldmine of information and a wonderful place to ask questions. But I wanted to see something fairly permanent online, a place where a parent who searches for CLE can come to read stories, have some idea of what to expect, and be encouraged about the outcome. I hope this blog helps to fill that information void for you.
Because CLE can look so different, my goal is to have a number of parents sharing their stories, so if you're interested in sharing your story, please comment and let me know. If you have any ideas or suggestions to improve the blog, I would love to hear them.
Helen, 2 out of 4 children with CLE
ReplyDeleteI just wanted to share my experiences with you, since I was interested to read the information on whether CLE is considered to be genetic. In 1990 I had my 1st baby, a son, who at 4 wks was diagnosed with CLE, a very little known condition back then. He was very unwell and had a right upper lobectomy at Great Ormond St hospital at 6 wks. The whole thing was a great shock to us. The internet was only very new then, so there was a minimal amount of information for us to research about the condition, let alone any kind of forum for parents. At the time we were told that it was a "complete fluke of nature" and everything would be fine for future pregnancies etc. 2 yrs later I fell pregnant again, and although the hospital offered me a later scan at 36 wks to check my second son's lungs, there was no other way to see if anything was untoward. Thankfully, he was born a very healthy baby and has been the picture of health all his life. We thought nothing more of it, and felt it had been a case of bad luck with the first son. 6 yrs later I had my third son. No additional scans were offered and he seemed healthy when he was born. At a 3wk check my midwife on a advised that he was a little bit wheezy and could I humour her by taking him along to the hospital for an x-ray. He seemed fine otherwise, but I took him along, only to find that he had CLE affecting the upper and middle right lobes. We were of course shocked and devastated having been through this whole surgery process before, but were advised quite quickly that the new idea was to "watch and monitor" rather than operate. We took him home, and did exactly that. He had regular visits to the specialist and apart from having difficulties when he caught colds etc for the first 5 yrs of his life, and needing a few hospital admissions for nebulisers, steroid treatments etc, he coped amazingly and did not have to undergo any surgery. Our fourth child, a girl, was born two years later, and has very healthy lungs. My children are now 22, 21, 14 and 12 and we now live in Australia. They are all pretty healthy, and despite being asthmatic and suffering a little through the UK winters until they were about 6 or so, the 2 boys with CLE have had no other problems to concern us. My only worry now is for my children as they become young adults and consider having families of their own. We have never been offered any kind of genetic testing through any of our pregnancies, simply because we were always advised there is no way it is genetic, and we were just "very unlucky". I would hate for my children to have to go through any of the trauma and heartache we endured with our first son, but I suppose we do have the advantage of knowing what to expect. We were fortunate to have had 1 who did not require surgery, and I believe in most cases if they can they will monitor rather than operate. My 1st son had a lot of infection in the remaining lung and this is why they chose to operate as his lung was about to collapse. I would hope that parents having a child with CLE for the first time will take away the message from my story that they do recover very well, over time admittedly, but they continue to grow into beautiful, strong, healthy teenagers and young adults. In spite of tough beginnings, life is pretty normal for all of them.It is just useful to have as much information as possible to hand, in case we need to provide any of them with support in the future when they have their own families.
Helen, thank you so much for sharing your story here. It really is encouraging to hear about how healthy your children have been. It also makes me feel like I was not completely CRAZY to have a level 2 ultrasound as well as an x-ray when my next baby was born to check out his little lungs. At 4 1/2 months, he seems to be CLE free! How wonderful to have the option of keeping the lung! It wasn't a choice for us--he was in a dangerous predicament. If you would like to share more details, let me know and we'll work out a way for you to have a post on this blog with your children's stories.
ReplyDeleteHello. Today we found out our baby has CLE. We'd never heard of it before until today and have just found your blog. While I was pregnant we thought she had a CCAM which was pushing her heart to the wrong side of her body and causing problems. A CT scan has now shown it is a CLE. We're not sure what to think and how scared to be. Is there a Facebook page that you use for day to day help/support that we could join? Many thanks.
ReplyDeleteYes! On Facebook, do a search for Congenital Lobar Emphysema Disease parents group and join it.
ReplyDeleteI'm so sorry to hear about your little one! It can be scary, depending on the circumstances, but your baby can be completely normal even after having CLE and lung surgery. I hope this is the case for your baby.
Hello and Happy Holidays to all. Can someone help me find the group on Facebook (I did a search on fb and can't find). My daughter is 8 weeks today and was diagnosed on day 3. She has been asymptomatic and we have one reputable hospital saying the new thinking is monitor patients like her with periodic X-rays as long as she remains a symptomatic and they are cautiously optimistic she will avoid surgery. Another reputable hospital saying do catscan and thinks surgery is likely or recommended. She has a little cough this past week but we are in ny and it is winter so I don't know if related.
ReplyDeleteThat's wonderful that you may be able to avoid surgery! I'm not sure if this link will work, but I think this is the link to the group: http://www.facebook.com/#!/groups/35725962175/
ReplyDeleteThank you very much, that worked. I'm very nervous since we have two reputable hospitals with two different opinions.
ReplyDeleteI’m curious to know what you decided my daughter 6months is having same issues as yours did I’ve only got one doctor recommendation to have surgery.
DeleteMy 8 week old baby went under surgery 4 weeks ago to remove the middle right lobe, we've been home 2 weeks and I still feel like he has continued to work hard to breath. Can anyone tell me when the breathing settles? Or a recovery timescale? Thanks Helen
ReplyDeleteI felt like my child was breathing well by the time we were discharged from the hospital. If you're concerned at all, definitely call your doctor. It's always better to play it safe, especially after lung surgery. Your doctor can give you a better idea of what's normal.
DeleteHi Helen,
DeleteOur son underwent his lobectomy in mid September and still has rapid breathing that our pediatrician considers out of the normal range (ranges from 30-56 breaths per minute). I also have concerns with our son's lack of weight gain. He started his life born at 8lbs 12 oz and gained rapidly until 2 months. Since then we are fighting to get him to 15 pounds and his percentile fell from 87th to 33rd at his last checkup. I would love to connect with you and we could share any findings that we uncover along the way. Every bit helps!
My husband was diagnosed several years ago with emphysema. He was able to quit smoking and we stayed on top of any illness. He has been hospitalized with pneumonia every year. His breathing has been getting worse but oxygen levels stay in the 97 to 98 range except when he's in hospital. For a year now he has been passing out. It is only for 1 to 3 minutes and was only when he would start coughing. The doctor changed his medications around but he passes out when breathing a bit hard. Also his feet swell up and are numb all the time. He then started using a cane. i searched for alternative treatment before i was introduced to Solution Health Herbal Clinic by a friend here in the UK, she told me this clinic have successful herbal treatment to Emphysema and other lungs diseases. I spoke to few people who used the treatment here in UK and they all gave a positive response, so i immediately purchased the Emphysema herbal formula for my husband and he commenced usage, its totally unexplainable how all the symptoms totally disappeared, his cough was gone and he no longer experience shortness of breath(dyspnea), contact then at their E-mail info@solutionhealthherbalclinic.com Or visit their website www.solutionhealthherbalclinic.com Herbs are truly gift from God
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