My baby and his condition #laryngomalacia

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So guys welcome back to my blog! Today I wanted to do something a little different, I wanted to raise awareness for my youngest son “Mini muffins” illness. It’s called Layrngomalicia and it was a condition he was born with

“Layrngomalicia is a disease of the soft laryrnx within the throat and is the most common cause of stridor in infancy, in which the soft, immature cartilage of the upper larynx collapses inward during inhalation, causing airway obstruction”

When mini muffin was born I noticed this weird sound at the end of his cry whilst in the hospital and I was completly ignored by the midwife! Being exhausted and tired I listened to her and took my baby home none the wiser how difficult things would get for us.
Fast forward. Mini muffin was 2 weeks old and we went out to tk maxx to get him some bits. Poor bubba was hungry and screamed the store down so dad held him whilst I went to pay and a gentleman approaches my partner introducing himself as a doctor and began pleading with my partner to take mini muffin to hospital because the sound at the end of his cry indicates breathing difficulties and he really needs to be seen.
The next day we went to the gp who agreed he had a stridor and a referral was made to ENT. The GP didn’t really take it as serious as we hoped and offered no advice or follow up Dispite the fact it was causing feeding difficulties.
#DrEgo

That referral took 4 months! and within that time mini muffin became a “failure to thrive” He dropped from the 50th centile to the 9th, and with every passing month it just didn’t seem to improve significantly enough. He couldn’t feed for very long and constantly came off the breast during feeds

“Layrngomalicia affects the suck, swallow and breathing pattern of the infant which can lead to a baby failing to thrive from insufficient intake during feeding”

His consultant then made the decision to go in with a camera (endoscopy) to loacte the cause and within 8 weeks we had to take him in…. It turned out he had mild Layrngomalicia and during his procedure they decided to open up the airway and performed a supraglottoplasty.

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Unfortunately it hasn’t been much of a success. Mini muffin is still on the 9th centile but has extremely slow weight gain. He now suffers with a tracheal tug (air sucks inwards beneath the neck) and chest recessions (air sucks in between or under the ribs) and we have and multiple trips to A&E querying respiratory distress!

At times it can be very distressing to see him like this, especially if he’s a little unwell… And no matter what the doctors say it’s not normal and will never be normal for him because to begin with, he wasn’t born with obvious breathing difficulties other then the stridor. So these are new symptoms that are destined to keep me awake at night to ensure he’s breathing.
Ive used my stethoscope more times on my own baby then i should have. 
Lately I’ve been faced with a handful of Dr Ego’s putting his new symptoms down to the laryngomalacia without even bothering to investigate it, I’m not being funny but last time they checked it was MILD!

Note: His Mild Layrngomalicia never caused respiratory distress before! But Severe certainly does!!
#DrEgo

So, On Thursday we went to see his new consultant and she has decided to perform another endoscopy and possibly another supraglottoplasty. We have been sent home with a sleep monitor test to measure he’s heart rate and oxygen levels and this will determine how much urgency is required. For once I left the consultants room feeling satisfied that I’ve actually been listened to and assured that my concerns are warranted.
She even had an explanation to why mini muffin is so mini at only 8.8kg

Babies with breathing difficulties body’s have to work harder to breathe therefore burning more calories then the average infant!

I mean why didn’t any of the other doctors tell me this so I wernt obsessing at every monthly weight check and praying for a day where his size wouldn’t be compared to the 7 month old next to him who was miles bigger and Mini muffin is ONE!
This is what I would tell myself after every criticising comment….

My baby’s not small! Yours is just big!

I am greatful to have mini muffin even if Layrngomalicia had to join the party. He’s an amazing and strong boy. I couldn’t be more lucky to have such a brave little solider.

I will keep you all posted on this journey, and would love to hear some of the difficulties or illnesses you may have experienced with your children/loved ones and how you coped?

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27 thoughts on “My baby and his condition #laryngomalacia

  1. It’s extremely frustrating as a parent to be dismissed by doctors when you KNOW something is wrong with your child. Dr. Ego is a perfect name for most doctors who think they know everything. Your little muffin looks sweet and healthy. I know he’s tiny but he looks angelic.

    Liked by 2 people

  2. I’m so sorry you have to go through all this! My niece was had SMA before passing away and the doctors literally knew nothing! It was up to my sister to do all the research and stand up to them! It seems like you’re going through the same thing. I hope you can reach out to a specialist or something. It would certainly help to hear from someone who knows a lot about laryngomalacia. I wish you and your little one all the best.

    Liked by 2 people

  3. Oh what a shame they didn’t get him in and treated successfully right away. Bless your loving sweet heart for being such a good momma to this beautiful boy. I can’t imagine that there is not a team out there to completely resolve this for your boy. Wishing you all the best with this. Paulette

    Liked by 2 people

  4. Mini muffin 🙂 Looks so cute !! Our children are so precious. Hope mini muffin thrives. He’s in the best place, in a home surrounded by love. Bless you all.
    Thank you for following Soul Gifts.

    Liked by 2 people

  5. I have had years of well meaning but wrong help. My advice is forgive the wrong if they mean well, forgive yourself if you believe the wrong person and persist, persist! Look for allies if you find a professional that listens (when they make mistakes they are willing to reconsider) and stick with them, get referrals & names from them & if things go wrong go back to them. Our GP kept us from going to far offtrack even if he couldn’t get us the help we needed at first. Our Occupational Therapist is a hub of referrals that she is willing to attend with us.

    Liked by 1 person

  6. This just shows that mummy always knows best! This is so informative and will raise awareness too. The love you have for your child beams through from your posts. Take care, Jess xxx

    Liked by 1 person

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