Laryngomalacia

Dear Chantx,

It's really tough that your baby has laryngomalacia. I can relate to the fear and loneliness; we had to search quite a bit for the right help. My daughter, who is now 3, has it and was operated on at 4 months old. Our son, who is 9 weeks old now, also has it, but a milder form. In his case, it mainly caused feeding problems. I'd really advise you to trust your gut instinct. With the second one, I immediately pushed for a referral to an ENT specialist because, from my experience, pediatricians often lack specialized knowledge. With him, they're taking a watchful-waiting approach due to maturation, but with a specialist in the background monitoring and intervening if it persists or worsens. Does your baby seem to be bothered by it otherwise? How are eating and sleeping going? Feel free to contact me directly; I'll respond faster that way

Here you go [email protected]

Hi,

Your story sounds so familiar. Trust your instincts. Our son is 13 months now.
After 2-3 weeks it got worse, he was pulling really hard from his chest cavity. After seeing several doctors, we were referred to the UZ Gent. He had several tests and eventually, at 4 months, they laser-removed some tissue because the noises got worse and his weight was too low. After the surgery, it was night and day. No more noises, no more pulling from the chest, and he slowly caught up on his weight.
Trust your maternal instincts.

Hi Chantx, the only advice I can give you is: go with your mother's intuition.

Here's a drama story. My daughter is almost 14 months old now and has laryngomalacia. Shortly after birth, she had stridor. The maternity care said not to worry, because it's normal. Babies make noises after all. I still asked for a first check-up at the CB. They said it sounded okay too. Meanwhile, she had hidden reflux (spit up from the nose). The next day, the CB doctor called me because she had been thinking about it that evening and had looked it up. She wanted to see my daughter again, so she asked if I could come by. We went that same day and were referred to the hospital. We got an appointment very quickly there too. There we got the diagnosis of tracheomalacia. After that appointment, things went downhill. My daughter barely drank, only slept, and had crying fits of at least 4 hours in one evening. I gave her a bottle every 10 minutes in the hope that she would at least get something in/keep it, so she could at least grow. She had severe retractions in her chest/ribs and nostrils. She was admitted 6 times for observation over 4 months. After asking multiple times for a referral to an ENT, I still hadn't received one. Eventually, I insisted, and only at 6 months was I referred.

At the ENT, before they even looked into her airway with a tube, the ENT doctor from the VU suggested surgery. Unlike the pediatricians, she found my story too worrying. She literally said: "You've kept your child alive, this is very intense, but this is such an easy surgery. If you had come earlier, you wouldn't have had all this misery." A week after this appointment, my daughter was operated on, and it was like a different child right away. Her development took off. She showed huge developments in a very short time. She could eat and drink again.

Meanwhile, she's walking and starting to say some words. And she's especially a very happy egg!

Sorry it's a very long story, but hopefully, it helps you! If I could turn back time, I would have skipped the referral to the pediatrician and gone straight to the ENT, even if I had to sleep at the door to get my child treated...