Congenital Lobar Emphysema and Congenital Pulmonary Airway Malformation — The Bump
January 2016 Moms

Congenital Lobar Emphysema and Congenital Pulmonary Airway Malformation

Hi everyone. I used the search menu but have not seen anything recent on this topic. The last post was from 2012 and I really wanted something a little more recent. Sorry if it offends anyone but I need to ask this question.

 Today has been extremely tough. I went for my 20 week anatomy scan today and babies were perfect in size in every possible way. Then the ultrasound tech brought in the doctors, yes, 2 of them, who told me our daughter has a lung abnormality. They are not 100% positive of what it is but the 2 things I listed in the title is what they are leaning towards. I saw the picture of her normal lung compared to the abnormal one and it is very apparent. It is collecting fluid and not draining. I am still breathing for them but it could cause problems when she is born. I know absolutely nothing about these conditions and have never heard of them so of course I am on google driving myself bonkers. I couldn't even stay at work today because any time anyone would ask how my appointment went I would start crying. So, I am home now. Our son is doing great and there are no concerns with him at all.

If any of you know anything about these or have experience with them please share. I have my MRI in 2 weeks but this is going to be a long 2 weeks. The doctors told me not to stress because it's the last thing I need but what parent wouldn't stress over being told this news. I really just want to know exactly what it is our little girl has and what we need to do to fix it.Of course I'm thinking it's something I've done wrong whether it's something I did or did't do although the doctor's told me it wasn't anything I did at all. 

I really need advice. Thanks for listening. 
1st child DOB 9/3/02

SO and I met 6/25/06

Married 9/2/12

Due date 1/16/16 with our twins!

Re: Congenital Lobar Emphysema and Congenital Pulmonary Airway Malformation

  • I am so sorry you're going through this. I don't have any experience, but wanted to send my thoughts and prayers. After dealing with a much less serious result from my US, I will say that stepping away from Dr. Google might be a good idea! Could you call your doctor if you want to ask more questions? I bet they would be more than willing to answer any questions. I feel like all Google ever does is make me freak out more. I know that it feels like knowing or understanding might help, but I've never found that to be the case.

    Don't guilt or shame yourself. I bet you've done your best this pregnancy in all areas, do not blame yourself! It's not your fault. Take care of yourself, momma! Hoping your upcoming appointments bring clarity and peace.

    PS I don't think there's any way will get any flame for this. We support you here!
  • I don't have experience with this, but I'm sorry you're dealing with this and my thoughts are with you. If it makes you feel better, my niece had a ton of lung issues when she was born, but they put her on steroids and did physical therapy at birth and she's a healthy 5 year old now.
    Baby Birthday Ticker TickerMarried DW <3 08.2013; AI 2x; IUI 6x; IUI #7 05.2015; DD born 2.2016 o:); Reciprocal IVF FET #1 on 11.18.2020 
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  • I don't have any experience with either of these issues but I did want to let you know that you and your LO are in my thoughts too.
    My H was born with fluid in his lungs, and he's told me that as a young child he was prone to pneumonia and ear infections but is now a perfectly healthy adult, respiratory-wise.
    I'm glad only one of your daughter's lungs is affected, and I hope that the doctors are able to give you more information and help you decide on the best course of action for her. Please keep us updated, I'll be thinking of you!
  • I am so so sorry that you are dealing with the worry that this brings. My thoughts and prayers are with you and your babies. I don't have any experience with this either, but, I did want to say that you should really hear the doctor's words when they tell you it's not your fault. Of course you love your babies, please don't blame yourself or feel guilty. I would also suggest staying off google, and referring to your doctor only if you have questions. I think that it's a bad idea to google things and worry yourself over different scenarios when there is not a specific and definite diagnosis at this point. I hope that you find more answers at your MRI. I know 2 weeks is a long time to wait, and it's hard, but you really can't do anything to help the situation or prepare until you do have those specific answers. Try to use this time to focus on self care. I know that you love your babies and are worried sick about the health of your baby girl, but don't forget to love yourself too.

    Lilypie First Birthday tickers
  • Krisdee123Krisdee123 member
    edited August 2015
    I'm so sorry, this does sound like a very tough day for you. I don't have experience with this, but my advice to you is to keep doing your best every day. Take care of yourself and try to stay positive about all the great things you found out today - I know that's probably easier said than done. My thoughts are with you.
  • I'm so sorry you're going through this. I don't have any experience with this but I'll be thinking of you and hoping for the best for your little ones.

    It's near impossible, but try to distract yourself with things - hobbies, date nights, etc. It really sucks having to wait for answers.

    Please keep us updated! *big hugs*
  • I'm so sorry! It sounds like you had a tough day! I don't have experience with but I know the worry that comes with hearing the word abnormality. Thinking of you and hoping the next two weeks fly by and that you have more information and answers soon.
  • I am so sorry to hear you're going through this. This community is here to support you as best we can. I hope your baby girl is okay.

    Lilypie Pregnancy tickers
  • skfgskfg member
    I am so sorry you are going through this. Sending thoughts of peace and ease your way. Be gentle w/yourself and do what feels right to you. If that means taking a day and lying low or indulging in your favorite comfort food, do that.
  • Thank you all so much for the support I really needed it today. Gonna try and stay as busy as possible for the next 2 weeks and pray pray pray. You all are amazing!
    1st child DOB 9/3/02

    SO and I met 6/25/06

    Married 9/2/12

    Due date 1/16/16 with our twins!
  • Praying for you and your babies especially your little girl. I have no knowledge about the conditions but just wanted to show you my support and let you know we are all here for you.
  • No advice, just hugs. I
    There's nothing worse than going in for a doctors appointment full of excitement and leaving with sadness. I'm hopeful everything will work out for you and the babies <3
  • I don't have any advice or experience to offer, but I wanted to tell you that you and that sweet baby girl are in my thoughts and prayers! I hope that you get some reassuring answers very soon!
  • Let us know how it goes... I feel like when doctors say don't worry, don't (though not sure you can help it! ).
    You are already doing the best thing you can do for her at the moment by getting the next evaluation!
  • Have you tried the high risk board? I haven't checked to see if you posted there yet, but they may be able to direct you in a good direction.

    Sorry you are dealing with this. Good vibes sent your way.
  • Hugs. Sending you positive vibes.
  • Thinking of you
  • Sorry as many pp's I have no experience or advice, but I will be thinking of you and hoping for the best! Please keep us updated.
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