Your baby's laryngomalacia is more than 'just some noisy breathing' and now he/she is headed into the OR.
You are scared, overwhelmed and unsure.
Am I making the right choice?
Will my baby be in pain?
How am I going to hand my baby over to the surgeon?
These thoughts consume you as you try to prepare for what lays ahead.
In an effort to continue providing support for our families, we have compiled a list of ten things you should know before your child has surgery.
1. Get A Second Opinion
About 5% of all babies with laryngomalacia will need a supraglottoplasty. Before signing any pre-op papers, get a second opinion from an ENT who specializes in laryngomalacia AND supraglottoplasy. Find a recommended ENT here.
2. Understand The Risks And Benefits Of The Surgery
Surgical intervention is warranted if a baby has severe laryngomalacia with recurrent apneic events, difficulty with feeding, failure to thrive and recurrent cyanosis and respiratory distress. Some risks are complications from anesthesia, aspiration, and infection.
"It was the scariest thing I have ever gone through but I would do it all again in a heartbeat if I had to!"- Jenny
3. Know What Recovery Could Be Like
Children are transferred to PICU once out of recovery. Recovery normally consists of oxygen via nasal cannula, pain medication (Tylenol to Morphine for severe pain) and IV fluids. Some children will need to be intubated for 24-48 hours due to swelling in the airway. Once discharged, pain management and infection control are the top priorities.
"Prepare to see your infant with lots of monitors and tubes on and in them."- Tarah
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| Baby intubated post supraglottoplasty. |
"She was on oxygen and intubated after her supraglottoplasty. It’s scary, but it will be worth it."- Kelly
4. If In The USA, Know Your Health Insurance Hospitalization Policy
Call your insurance company and ask about any deductibles, copays, and deductibles. Also, ask what is their policy of your child receives care from an out-of-network doctor while in the hospital.
5. Take A Tour Of The Hospital
Pay attention to where the cafeteria is and it's hours. Also, ask about getting a parking pass.
6. Know The Hospital's PICU Visitation Policy
Most PICU's only allow one parent to stay overnight and only two visitors in the room at a time. Vistors gifts and flowers are usually discouraged.
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| Baby and #LuTheLamb in the hospital. |
7. Know What To Bring To The Hospital
Read this list to know what to bring to the hospital.
"Another mom told me to bring Advil, I got a massive headache! Surgery was delayed until 3:00PM"- Kathleen
8. Know You Are Supported And Not Alone
Connect with over 2,500 parents here.
Let family and friends know how they can help here.
"Stay strong, you will get through it"- Maria
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| LM parents at a Malacia Meet-Up in New Jersey. January 20, 2018 |
"You’ve been so strong and fighting for your child for so long and now your baby is getting the help needed. "- Karen
9. Apply Your Child For A Coping With LM Care Package
Each care package includes #LuTheLamb, a handmade blanket, hospital gown and other goodies to help comfort your little one. Apply here.
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| Handmade blankets are included in CWL's care packages |
10. Know Surgery Does Not Cure LM
In otherwise healthy babies, most of the time a single supraglottoplasty will improve the airway obstruction caused by laryngomalacia and no further surgery will be needed. Supraglottoplasty has been shown to have over a 90% success rate in healthy children with laryngomalacia. There are times, however, when a second surgery may be needed if your baby is still having symptoms of severe laryngomalacia such as recurrent apneic events, difficulty with feeding or failure to thrive. Studies have shown that this is more common in neurologically delayed children. Up to 70% of children with neurological delay and laryngomalacia may require a revision supraglottoplasty.
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