Breastfeeding A Baby with Special Needs
about Deneige Outram, RN, BSN, IBCLC
Hey there! My name is Deneige Outram and I am a mother of two uproarious tots, a public health nurse, International Board Certified Lactation Consultant (IBCLC) and founder of What the Boob — a brand that focuses on educating and supporting moms throughout their breastfeeding journey. I first began my journey as a breastfeeding advocate after a very dear friend of mine made the decision not to breastfeed her baby due to lack of education and support. I then made it my mission to normalize breastfeeding within underserved communities and educate moms on all things breastfeeding, through the production of short, animated, and mildly humorous info mations (informational animations). If you know Buzzfeed, you can think of my content as the Buzzfeed of breastfeeding education. I am a lover of all things breastfeeding and hosted NYC’s first TIT-NIC in 2019 that focused on giving mom’s of color the opportunity to build a community via picnicking and granted them free lactation support from IBCLC’s within the community. If you’d like to learn more about breastfeeding, and my advocacy efforts, you can keep up with me on instagram @whatthe.boob.
Congratulations on the birth of your new beautiful baby! — and HOORAY for making the decision to feed your little one breastmilk! Depending on the needs and capabilities of your baby, you may or may not be able to feed them directly at the breast. But don’t worry, there are alternate ways to feed them that provide closeness, bonding and the myriad of undeniable benefits of breastmilk! Breastmilk is actually more beneficial for babies with special needs because it has immunologic and anti-inflammatory protective factors that may protect against gastrointestinal infections, ear infections and respiratory infections. Breastmilk also contains hormones called cholecystokinin that is proven to be calming and soothing for babies — an added benefit to babies that experience stress.
While breastfeeding may only be perceived by the eye as just sucking and swallowing, babies actually use approximately 40 different muscles in their lips, tongue, jaw and cheeks, as well as six cranial nerves, to control and coordinate sucking, swallowing and breathing! Much more than the eye can see! Some special needs babies who have been diagnosed with neurological impairment, congenital disorders or illness lack the necessary muscle tone to adequately latch, coordinate intrinsic actions, and transfer milk effectively.
breastfeeding off to a good start
Both you and your baby will require extra support from your team (partner, family, friends pediatrician and lactation consultant) when it comes to feeding your baby and that is not unusual to any mom. Here are a couple of tips to help you and your little one get off the a good start.
Aim to have a vaginal, unmedicated birth
Studies have shown that cesarean sections, inductions of labor and/or the use of certain medications during the labor process can delay the onset of milk production and may interfere with your little ones’ ability to latch. While these interventions may sometimes be necessary, if you have the ability to have a vaginal, unmedicated birth, go for it! Not only will you be able to engage in immediate skin-to-skin and latch your baby (as long as your MD deems it safe), but your body will heal much easier and faster!
Engage in uninterrupted Skin to Skin
(for at least the first hour!)
We call this the Golden hour! As long as your baby is born vaginally, healthy and full term without the need for any immediate direct interventions, your little one can be placed on your bare chest, skin to skin. This hour is important to help your baby transition to extrauterine life and help trigger and stabilize key hormones that aid in milk production!
Latch your baby as soon as possible (& often!)
The earlier you get your little one onto the breast, the better! And the more often your little one suckles at the breast, you are signaling your body to continue producing more milk. You want to ensure that you are feeding your baby on demand, when they display hunger cues. Some common hunger cues are: rooting, mouthing, putting their hands to mouth, REM and crying. While crying is a hunger cue, you do not want to wait until your baby is at this stage to feed them! This can impair them from latching effectively. Please note that It is typical for newborns to feed every 1.5 – 2 hours, so be sure to keep an eye out for those signals!
Utilize a Lactation Consultant
Prior to the birth of your baby, connect with a local lactation consultant. Lactation consultants are specially trained professionals who provide education and support to lactating individuals. It is very beneficial to start receiving lactation education prenatally to help you best prepare to feed and support your baby.
If you were not able to secure a lactation consultant early, it’s never too late to seek help or consultation! Every hospital has a lactation consultant on staff who can help you get off to the best start! If you’ve already been discharged from the hospital, local lactation consultants can be found on the United States Lactation Consultant Association website, the International Lactation Association website, La Leche League, or even in a Google search. Be sure to interview your lactation consultant to find out their experience working with babies with special needs.
Utilize the Hospital Grade Electric Breast Pump
If your baby is unable to secure and maintain a latch and/ or remove breastmilk efficiently, using a hospital grade breast pump can help you initiate and maintain your breastmilk production.
Hospital grade breast pumps are the creme de la creme of breast pumps! They are multi-use breast pumps with stronger suction, special wavelength options, and programming that allows lactating individuals with certain medical necessities to produce the maximum amount of breast milk possible.
Diagnoses and their implications on Breastfeeding
Now we will take a look at common newborn diagnoses and their implications on breastfeeding. Collaboration with your baby’s pediatrician as well as your Lactation Consultant can help you develop a breastfeeding/ feeding plan.
Depending on the gestational age of your baby at birth, your baby may or may not have the developed muscles or coordination to be able to latch, suck and/or transfer milk. Even though your baby may not be able to latch directly onto the breast, they will still benefit from the amazing benefits of breastmilk!
Down’s Syndrome & Other Trisomy Disorders
Baby’s born with Down’s Syndrome may lack the muscle tone to latch on independently due to muscle weakness. This does not always mean that they cannot breastfeed. Most times, these babies just require extra support. At first, you and your little one may face some challenges, but with patience and collaboration with your baby’s healthcare team, breastfeeding can be successful.
Cleft Lip &/or Cleft Palate
Infant’s born with cleft lip may present with difficulties latching on due to their inability to form a seal around the breast. A lactation consultant can explore different techniques to feeding babies with a cleft lip.
Infant’s birth with cleft palate may also present with difficulty generating and maintaining enough suction to effectively remove milk from the breast.
Depending on the assessment and recommendation by your baby’s health care team, a palatal obturator may be helpful. Studies show that the combination of a palatal obturator and lactation education reduces feeding time and increases volume intake, which is ultimately associated with good growth.
Pierre Robin Syndrome
Infant’s who are diagnosed with Pierre Robin syndrome (PRS) present with a smaller lower jaw, cleft palate and an unstable tongue that can fall to the back of the throat and obstruct the airway. Babies with PRS have a very difficult time breastfeeding.
Neurological disorders are any disorder that may affect your little one’s brain, spinal cord, peripheral nerves, and muscles. Some common neurological disorders in infants include: seizures, encephalopathy, intracranial hemorrhage, hypotonia, birth asphyxia and congenital neurological defects. Many of these disorders can lead to feeding difficulties.
Even though your little one may not be able to latch onto the breast, they will always benefit from the goodness of breastmilk!
Alternate feeding methods such as a supplemental nutrition system and special needs feeders are available to help you feed your baby!
Be patient and give yourself grace!
Skin to skin is always for the win! Hold your baby skin to skin, which their cheeks touching your chest when feeding from any other device including a bottle.
Utilize resources available, especially support groups to help you throughout this journey!
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