Wednesday, November 19, 2014

Breastfeeding With A Cleft Lip and Palate | It Can Be Done

I am proud to introduce to you my dear friend and our guest blogger, Rachel Morgan, here to talk about her experience nursing her baby through special circumstances, in which moms are told, "it can't be done."

One month ago, I gave birth to a beautiful baby boy. Like most soon-to-be mothers, I

envisioned bringing my nursling up to my breast moments after birth allowing him to root

around until he found just the right spot to begin suckling. This didn't happen. My little one

was born unable to breathe and needed medical assistance to begin his life outside of the

womb. He was taken from me and wasn't returned until an hour and a half later. We were

also surprised to find out that he had a unilateral, incomplete cleft lip and cleft palate. In the

seconds after his birth, I knew the odds were against us in our breastfeeding journey.

I was given 45 minutes to try to breastfeed him, we had some success but his blood sugar 
was still too low, so back to the stabilization nursery he went. I refused to allow bottle 
feeding to avoid nipple confusion, so I hand expressed colostrum and they spoon fed him. 
6 hours later I was able to try nursing again. 

During the wait I immediately Googled 
'nursing baby with a cleft' 
'tips to breastfeed a cleft affected baby' and 
'can you breastfeed a cleft baby'. 
After a couple hours of searching, I knew I was without support. 

Every article said it wasn't possible, it's too much work for both baby and mother, they'll
never learn to properly latch, and breast is best- just not at the breast but in a bottle. I was
not convinced. I nursed my oldest for 2 years, attended monthly La Leche League meetings, and have read countless articles about breastfeeding. I knew it could be done and I wanted
to give it a chance. I asked every nurse I saw about breastfeeding with a cleft; most were clueless, some were supportive of trying, but almost all offered a new bottle to try. A condition ofour discharge was to show that we could bottle feed him.

As soon as we got home I stuffed the bottles in a cabinet and settled in with my nursling to keep working on our latch. A week after being home he got sick and we spent another 10 days in the hospital. Once again I had bottles thrown at me left and right. We had to meet with a feeding specialist, even though his nourishment was completely unrelated to why he was there. I requested to see the lactation consultant, and sadly even she didn't really know how to nurse a cleft baby. 

The doctors would all tell me that it was great that I was trying, 
but when it didn't work out we could talk about supplementation. I would smile, nod, and 
continue to nurse. 

Of course, if baby wasn't thriving and couldn't gain weight, I wouldn't hesitate to 
supplement. But for now, all was well. He was gaining, slowly… but gaining, he had 
developed normal sleeping patterns, and was as alert as a newborn is supposed to be. 

Today, we met with his surgeon and, once again, bottle feeding was brought up. We were 
referred to a feeding specialist and even though they could see him latched, hear him swallowing, and see the milk dribble out of his mouth as he pulled away satisfied with a full belly, they were still adamant about using a bottle. Today, I left the office in tears. I chose the best surgeon in the state, I’m trusting him with my baby’s life; but neither he nor his team support me.

It's hard to hear day after day that what you're doing is great, but not good enough. 
Although I know my baby is thriving, it’s hard not to let my self-confidence 

This is why mothers with cleft affected babies don't nurse. 

They are told that they can't, so they don't. If they find out about the cleft while pregnant, 
they're automatically told not to try. Instead of learning how to position your little one just
so and hold your breast with one hand so it covers the cleft and using the other to press his 
head as firmly to the breast as possible while also hand expressing to the rhythm of baby's 
suck, they are told to buy special bottles and prepare to spend countless hours pumping. 
There is no support or teaching. Instead we’re told not to even try.
                    So here's what I've learned this past month –
  • Doctors are medical professionals who are trained to recognize a problem (a cleft) and fix it (bottlefeeding).
  • They want to monitor everything; weight gain and feedings. They don't like that they can't measure how many ounces and calories a baby gets from the breast.
  • They are intimidated by breastfeeding, most of them can't even look me in the eye if I'm nursing while they're talking to me.
  • Cleft specialists don't learn about breastfeeding in school. They learn about Habermans, Mead Johnsons and Pigeon Nipples - bottles designed specifically for cleft babies that allow the parent to squeeze the milk out of the bottle instead of letting the baby suck.
  • For so long, it has been taught that you just can't breastfeed a cleft baby, so many doctors just don't know otherwise and don’t support letting the mother try.
Luckily, I was blessed with a great milk supply and a great support system of other nursin mamas. None of them have babies with a cleft, but they have all been met with some sort of struggle in their nursing journey. So for any mom or soon to be mom of a cleft baby who mayhave stumbled upon thisblog, I'm here to tell you that it is possible; it can be done. Thedoctors don't always know everything.You don’t have to listen to all of their suggestions.Most of all, you are the mother, and you know yourbaby and his needs best.

It's a lot of hard work to nurse your cleft baby. They may only latch in certain positions. It'll likely take both hands to nurse. Your pump will be your best friend to help maintain your supply. You'll always have a multitude of pillows around you for comfort since you’ll like be spending hours working with your baby to perfect their latch. You will have a lot of self-doubt and will always question if your nursling is getting enough. But the weight gain, the milky smile, the satisfied slumber and your empty breasts will prove that you're doing just fine.

Since she wrote this, Rachel has continued to breastfeed her beautiful baby with much success! He is gaining weight like a champ and getting more and more adorable every single day!!


  1. I came across this article via pinterest and wanted to add my story.....

    I found out at 20 weeks pregnant that we were having a girl and she would be born with a cleft lip and palate (unilateral and complete). We were told she would never breastfeed which I was gutted about as my toddler nursed until 2 years and I loved it. We were put on to a lactation consultant who told us we should try but mentally prepare not to because it's very unlikely. She was amazing though and told me she'd be there to help us try and at worst it was still an option to let my daughter 'comfort suck' a bit (which everyone else seemed to forget was something we could still do). When my wee girl was born she was so tiny and beautiful and perfect. I cried because I loved her so much and her cleft didn't change how I felt about her at all (which sounds awful but you know, for me I worried my first emotions on meeting her was going to be shock). When I held her for the first time our L.C suggested I let her latch for comfort and there were lots of tears from all the nurses and dr in the room when we realized she had started to feed. It was amazing and so unexpected!

    Our journey with breastfeeding has been hard (she takes in so much air that she needs to be burped for an hour or so), it can be painful (but can be for any mum I guess!) and there is a fair bit of uneveness as she can only latch on one side but it has been worth it.

    A baby with a cleft is truly such a gift. To any expectant parents reading this, I promise you will love you wee cleft baby so much. My girls surgery is next month and I am devastated that her mouth will be different. I will miss that beautiful smile so much. Her new one will be beautiful too but man, that first moment I saw her she was just so 100% perfect!

    1. Thank you so much for sharing!!! Your story is absolutely beautiful and it is so wonderful to hear from more mothers. Sharing stories inspires all of us and provides the encouragement we need to parent our children the best we can. Thank you.


Contact info

Jennifer Valencia | Labor & Postpartum Doula | 928.300.1337


Blog Directory