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"Your baby has Laryngomalacia"!!!????

I will explain a little about my labour, maybe a detailed explanation might go up in the future but lets put it like this, it was not nice and after suffering from an Irritable Uterus throughout my pregnancy followed by a 42 hour labour and a scary ending but I got the beautiful Tillie Bean so was worth every second! Basically the cord was wrapped around her neck twice and right round her body. She had the hiccups so much during pregnancy and I am wondering if this does have a connection to the problem which was about to be revealed!

I remember a few nights after Tillie was born hearing a strange noises when she was breathing, I had to stay in hospital for a few nights as I needed a blood transfusion, I buzzed the nurse to check about her breathing but was told 'it is just mucous on her lungs it is very common it won't last long'.
Even as a new mum I thought that this wasn't the case, but who was I to argue.
This 'mucous' was getting louder and louder and by her 6/8 week check up it was quite noticable, the Dr said
"Your daughter has laryngomalacia, but don't worry I have heard much worse she will grow out of it"

Oh right that's ok then!????!!! What on earth is it?
If you are like me and are unsure what is is then here is an explanation
"Laryngomalacia is a condition seen in small babies in whom the larynx is particularly soft and limp, possibly because normal development of the supporting tissues has been slow or delayed.
Until the larynx becomes stronger, problems can arise for several reasons:
•The soft limp tissues of the larynx can collapse as the baby breathes in. This interrupts the flow of air and causes noisy breathing, with a sound called stridor, which is a sign of obstructed air flow – in fact laryngomalacia is the commonest cause of stridor in babies. It may be worse if the baby has a respiratory infection." BBC HEALTH


This really scared me as we were aware of a child locally who had a 'floppy larynx' the poor little girl couldn't talk as she had a tracheotomy and was in and out of hospital because previously she turned turned blue on a number of occasions, her condition was much worse and she is still having problems now, it turns out that Laryngomalacia is quite common in infants and normally rectifies itself without treatment.

I breastfed Tillie until she was 3 months old, she was always very fussy when eating and often jiggled around and I seemed to feed her every thirty minutes some days, she never had a problem gaining weight until she was about 3 months old, but she was never really a very settled or contented baby.

My mum said maybe it would be an idea to try Tillie on formula as I was losing a lot of weight and Tillie began to lose a little of hers. I tried her on SMA ready milk but she reacted to it and was covered from head to toe in a rash.
The DR said she was lactose intollerant, she was a different baby once we got her onto the lactose free milk however she did suffer badly with Acid Reflux which is a common complaint of a child with laryngomalacia, but she was much more settled and lasted much longer than 30 minutes without a feed.
One of the things we noticed was that Tillie hardly made a sound when she cried as when she did cry she struggled to breathe, so I have always found a way to distract her as soon as I could. She never had a "baby cry" we still find it strange when we hear a baby cry, we are just not used to hearing it.
If Tillie got excited, tired, or was laying down her breathing would be particularly loud.
I was talking to my mum tonight about it, she said she remembers holding Tillie and she felt constantly 'Ruttily' and mum admitted that the noise terrified her. But as a first time parent I didn't know any different so I just carried on as normal.

Tillie is still prone to coughs and once she gets a cough she struggles to sleep and I do notice that she always choked alot more than other children but only for a few seconds then sorted herself out I guess you just learn to live and cope the best you can. She was always happy it was just other people commenting saying 'oh bless her' and we noticed that after her being eight weeks old she became increasingly clingy to me and wouldn't let anyone hold her apart from my partner, my mum or me.
I was possibly slightly protective because I knew if she cried then it would effect her breathing which would then result in her breathing really loudly for the next few hours, which would lead to choking episodes and her being a bit unsettled so I didn't pass her around just so she didn't cry.

She has never slept through the night and I have always used laryngomalacia as an excuse (I have ran out of excuses about her sleeping now that it is very rare that you hear her breathing loudly unless she is having a particularly bad time teething or is unwell)
When Tillie was 9 months old we bought her a new car seat, I remember she was asleep one day and we had been in town so thought we would grab a Macdonald's meal we went through the drive through, I just remember seeing Tillie gasp for air, it probably only lasted seconds but it seems like ages, Nick and I were both really shaking it scared us so much but that was the start of many episodes like that and she still has them when she is asleep in a daytime rather than at night.
Every time we took her to the Dr's they said she was fine, Nick's mum is a health visitor so it was always nice to have her advice but no one was really worried about the noises, her chest was always clear. It obviously sounded a lot more scary than the condition itself.
We do have an inhaler for her as Nick suffered really badly with asthma as a child.

The noise seemed to peak when she was about 6 - 9 months old, often she would try to make sounds but nothing came out but apart from that she was a healthy little girl.

Now at 17 Months it is extremely rare to hear her noisy breathing apart from if she is unwell or teething.

When we initially found out about Laryngomalacia I read lots of information online as no one seemed to know a lot about it and the Dr's didn't seem worried. We have always had the head of her cot tilted slightly with books and I bought a humidifier for her room.

She has suffered from croup a couple of times which is very unpleasant, however the noisy breathing 'stridor' is the noise they tend to make when they have croup so Tillie seemed to handle it quite well.

If you have any questions about laryngomalacia please feel free to ask, I wish I had someone to talk to x

Comments

  1. Steph from CWL sent me. I hope you and little Tillie are doing well. My son suffers from LM as well. He had surgery to help lessen his symptoms. Feel free to contact me if you'd like to chat.

    <3 erin

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  2. Hi, it's always hard when your little one is diagnosed with something. I remember my littlest (now 5) used to get constant ear/throat infections and the doctor flippantly saying "well, it doesn't really sound like cystic fibrosis or heart problems". So I immediately went home, looked it up on the internet and panicked! All children seem to have weaknesses, some prone to tummy bugs, some to throat and ear problems. My little one is 5 and still comes into us every night. Strangely, because he's probably my last baby, I don't mind!
    Tillie will probably be fine. But you can't help worrying because you love them, Julie x

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  3. Hi, I know this blog is over a year old now but I just have to say that reading it warlike reading about my little boy. During pregnancy he constantly had hiccups, my labour was a nightmare and he had his chord round hisnneck and body. He was always "rattle" and I was told he had a floppy larynx by our GP, he kept being sick and was diagnosed with reflux and the milk allergy. He suffers with croup too, he's 2 and a half now and is currently suffering from his 4th bout, which is starting to look like a bad one. He has inhalers as they have also diagnosed him with asthma, and he has been hospitalized with croup before., because of his floppy larynx he needs nebulizers and steroids when he gets respiratory infections. I couldn't believe the similarities between your little girl and my son.x

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  4. Thank you for your story, my 8 month old son has laryngomalcia and is currently waiting surgery in April..

    I noticed he had severe hiccups whilst I was pregnant but I was constantly told he was contented and the same after he was born.. I also had a traumatic labour but it was short I delivered my son with ambo's assistance on the side of the road in the middle of winter..

    I constantly mention this squeaky noise my son was making but midwifed and drs kept saying it was normal. At 4 weeks old he got bronchiolitis and my GP mention he had a stirdor with it and she will keep an eye on it.. At his check up at 6-8 weeks she referred me to see a paediatric dr to check him out as she detected a murmur it was then when I was told they suspected my so had laryngomalacia but no diagnostic testing was done..

    As the months past my son was getting bronchiolitis every 4 weeks. I took him through emergency as he was struggling to breathe and drink at the same time but they said it was bronchiolitis and told me to go home. I refused as it was scary heating my baby struggle to breathe that I was scared I was gonna wake up and find him not breathing. They kept him over night and made an emergency paediatric appt and pulmonary appt.

    At 7 months (only a month ago) they performed the bronchoscope and diagnosed my son with Type 1 and type 3 laryngomalcia. At this appt they booked for further investigation. He had his pulmonary appt and they said his cause of reoccurring bronchiolitis is caused through aspiration of food and fluids so he now requires thickner and antibiotics until he is cough free for three days..

    Laryngomalacia is scary for parents and child but I wouldn't change my son one bit..

    ReplyDelete
  5. HI. um i guess you are all mothers but im just a teen turning 18 this october. and I had LM when i was born.
    I was born in India so all my parents were told was that my breathing will be abnormal and will almost sound pigeon-like however its not harmful and that I will out-grow it. Therefore my parents didn't worry much and moves on. I used to constantly get sick and was not able to be under anthesia since it became very harmful for me.

    But nothing much was done like no surgeries or anything like that. I grew up and here in Canada i play many sports and i constantly get told my breathing isnt healthy and so one day I decided to ask my dad and he told me about LM.

    I just really wanted to share story. I guess in a way I never out-grew it and it also affected my jaw structure of my jaw and as a result I ended up with a "vampire teeth" or in the words and narrow jaw dues to my breathing.

    My breathing does get noticed a lot and at times I feel embarrassed but i guess it is what it is.

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  6. Can anyone tell me if most children born with laryngomalacia can talk? My daughter hasn't spoken yet & I don't know if that is why or if I'm worrying needlessly. She was diagnosed at 2 days old. Eats fine & is growing. She's on 2 medications for reflux.

    ReplyDelete
    Replies
    1. Of course they can talk, its the tracheal wall not the vocal cords..

      Delete
    2. Actually, it affects the vocal chords too. My son who has LM had paralyzed vocal chords due to inflammation from reflux occuring internally. After being on omneprazole, his vocal chords recovered.

      Delete
  7. My child is also suffering from laryngomalacia. Doctor told he will be fine after 3 months. Can anyone tell me what ca re should I take to ease his life.

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  8. hi i have a babu girl 5months she have larynfomalicia since birth :( sometimes i dnt sleep bcoz im so worried about that im so scary :(

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  9. My son was born Jan 2014 and at just 5 wks old was diagnosed with LM and just recently been diagnosed with broncholitis also having reflux at birth now settled I have always been very scared weather or not I may wake up to my son not breathing still to this day I worry he is now 11 months old Drs tend to fob their patients off with rubbish they don't understand when having children with Lm it should be made clear what help is there straight away rather than waiting til the worst happens just recently I got told my son had a blocked nose the same day he was admitted to hospital with suspected broncholitis drs need to be retested on their skills and abilities of being a doctor

    ReplyDelete
    Replies
    1. Oh goodness I wish I had seen this as I now have a son who was born Jan 2014 too and he was born with it as well - he suffered a lot more with his chest and had constant infections. It is very scary isn't it. Even though the doctors don't really seem too bothered. I have heard of some many more cases recently and very local to me so I get lots of people asking me questions as the doctors don't seem to give any answers.

      How is your son now?

      Delete
  10. Has anyone's child grown out of LM and if so around what age? I am not enjoying the suspense of not knowing if my daughter will outgrow this or not...

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  11. My daughter was diagnosed with laryngomalacia and trachomalacia at 4 months old. She has had loud breathing(stridor) since she was 4 weeks old when her reflux symptoms started. Her pediatrician just thought it was from the reflux so put her on reflux meds...she never made the noisy breathing sounds when we were at the doctors office. A few days before she turned 4 months old, she got a cold. A couple days later, she quit breathing and we had to do CPR. Luckily we got her breathing again. It was the scariest thing ever! They diagnosed her with laryngomalacia. They tried to control her reflux better with stronger meds and thickened formula. But a week after being released from the hospital, she was readmitted and had surgery. During the surgery, they found that she also had trachomalacia...her trachea is compressed by an artery. This is something else that kids typically grow out of, but it takes some time. So we are in a wait and see with her now to see if she will get better on her own or need surgery. She is 5.5 months old now. And it is day by day. We do not know what caused her to stop breathing...if it was the laryngomalacia or the trachomalacia or both. But I would recommend every parent, especially if your child has laryngomalacia, to take a CPR class. It is better to have the knowledge and never use it, then to not have it and need it!

    ReplyDelete
    Replies
    1. Hello! I am so sorry I have just seen this, I stopped blogging but just have returned. How is your daughter now? We have since had a son who also had LM he was noiser but seemed to have less issues with his, he seemed to suffer more with his chest and infections.

      Would love to hear how your daughter is now

      Delete
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