• Stephanie Hueston, CWL Founder

Breastfeeding Advice From A Three-Time Malacia Mom

Breastfeeding.


The word sounds so glamorous while your pregnant then four days post-birth, it's 2 AM and you’re trying to get a screaming, hungry newborn to latch on. He latches on and the pain is so excruciating your pretty certain you just saw stars. As your milk fills his small belly, he begins to choke. His tiny arms are flailing and he’s gasping for air. You both sit there and cry, you wanted to breastfeed so badly.


Does that story sound familiar?


It does to me, I have been there... three times. Breastfeeding is challenging enough then add an airway disorder, it gets a whole lot of complicated very quickly. As the exhaustion builds and emotions rise, finding outside support and help is a feat within itself.


Once you have the proper education, help, and support, breastfeeding can be one of the best things to ever happen to you and your Pint-Sized Powerhouse!


YOU CAN DO THIS.




First thing, take a nap.

Even Malacia Moms cannot think clearly on two hours of sleep. Let Dad or Grandma watch the baby for a few hours while you regroup and rest.


Feed yourself, well.

Recovering from birth and making milk are two very draining events on the body. In the middle of all that you just received your baby's diagnosis. Give your body the right fuel while increasing your iron intake to help with postpartum bleeding. Every time your baby nurses drink at least 8 oz of water.


Get comfortable.

No one likes eating over the kitchen sink! Find a relaxing, comfortable space to nurse. Some moms like nursing in rocking chairs while others enjoy nursing in bed.


Have a small box next to you with all your must-need items:

mobile device

paper and pen

lip balm

water and a snack

nipple cream

burp rag

breast pads

magazine or book

TV remote control

breastfeeding support pillow

heating pad for post-birth cramping


Play relaxing music and put your feet up.


Ask for help.

The "raising a baby takes a village" saying didn't come out of nowhere. Ask close family and friends to care for older children, pets, and the house. If family and friends suggest helping by feeding the baby, gently remind them you and your baby are working very hard to establish a successful breastfeeding relationship right now. There will be plenty of time for play-dates with Grandma in the future!


Find a good ENT.

You will have a very hard time continuing your breastfeeding relationship unless the malacia is treated properly. Reflux medication or surgery may be needed.


Find a recommended ENT here.



Rule out other issues.

Rule out tongue tie, lip tie, forceful letdown, and other causes of breastfeeding trouble.


Get a good breast pump.

Even if you plan on exclusively nursing, you still need a good pump.


Reasons to pump:

  • To give milk via bottle, feeding-tube, or SNS. This is important for thickening feeds or after surgery/airway-related procedures.

  • To donate milk/build freezer stash.

  • To give yourself a break.

  • To help with mastitis/plugged duct.

  • To increase your milk supply.


Not all pumps are created equal, do your research. While a double electric breast pump may work well for many women, some respond better to a single manual pump.


I always preferred a single manual pump. 

DO NOT base your supply on your pumping output. If anyone tells you, you only pumped 2 oz the past two sessions, you are not making enough for your baby, let them know they need to brush up on their breastfeeding education.


Formula is not bad.

Formula has saved many babies’ lives over the years, including my own. In times of need, it is a wonderful thing. When used correctly, formula can actually help many breastfeeding moms overcome their challenges.


Thickening breast milk without formula.

There are options to thicken breast milk without using formula.


Position is everything.

From relieving a plugged duct to correcting a poor latch, nursing positions can make or break a breastfeeding relationship. As your baby gets older, he will create new nursing positions, oh the joys of nursing a toddler! Until then, you are responsible for finding what works best for YOU and your baby. Many malacia babies do well with the football hold, nursing upright, and the side-laying position.




Dealing with negative feedback.

There will always be someone who has to rain on your parade. Breastfeeding makes some people uncomfortable. Remember, it’s their problem, not yours. You are doing the very best thing you can for your child. You are providing him with amazing nourishment, security, and creating a bond unlike any other.


Low/no milk supply options.

If you are still having low or no milk supply after working with your Lactation Consultant, using human milk donations may be a good option for your baby. Eats on Feets and Human Milk 4 Human Babies are both great resources. Also, if you have a close friend/family member who is nursing, don’t be scared to ask her for milk. 99% of the time she will be honored to donate.


It's not always going to be this hard.

From painfully engorged breasts and bleeding nipples to trying to get you baby to relatch after surgery may seem like an endless uphill battle. You will get there. Your breasts will return to a more normal size in about six weeks. Your nipples will heal as your baby (and you) become better with latching. Your baby will not always nurse for 45 minutes every 3 hours and as your baby learns how to crawl and play, you will have to remind him to take a break and nurse.


Most importantly, the choking from the malacia should subside as your baby gets older or when the malacia has been medically treated.


Stay brave, breathe, and nurse on.



Stephanie Hueston is the Founder and President of Coping With Laryngomalacia, Inc. and has successfully nursed three children with airway malacia.

Stephanie can be contacted anytime at hi@copingwithlm.org.


This post is based on experience only. It is not intended to substitute any doctors medical advice. Should you have a serious problem breastfeeding or your child is having trouble breathing please contact your doctor immediately.


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