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Estimated reading time: 5 minutes


Cleft Lip and Palate Breastfeeding Mothers' Stories
Rachel Morgan, Cottonwood, Arizona, USA
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I was shocked when the nurse quietly told me, “He has a cleft lip and palate, but he’s beautiful.”

Breastfeeding my first child was easy. I had a great milk supply, her latch was perfect, and I had a ton of support from my local La Leche League.

When I became pregnant with my second child, I imagined it would come just as naturally again. However, moments after a traumatic birth, I was shocked when the nurse quietly told me, “He has a cleft lip and palate, but he’s beautiful.”

Avery was taken to the stabilization nursery, where they could regulate his breathing and temperature. He was returned to me an hour later, placed on my bare chest for skin-to-skin, and we attempted to breastfeed. I tried to help him latch, just as I had done a thousand times before with my daughter, but he could barely keep my nipple in his mouth. He tried to suckle, but I couldn’t feel any suction. After an hour and a half of trying to breastfeed, his blood sugar level was falling too low, and he went back to the stabilization nursery.

While he was away, I Googled “cleft lip and palate breastfeeding,” “how to nurse a baby with cleft,” and “is it possible to breastfeed a cleft baby?” The majority of what I found from my searches told me it wasn’t possible. I knew nothing about clefts and next to nothing about the mechanics of breastfeeding, but my instincts told me that we could do it—we could at least try.

Mothers'Stories_CleftLip&PalateBreastfeedingBaby_Molly-Weber_

I hand expressed some colostrum and spoon-fed my sweet boy. As soon as his blood sugar was raised, we attempted to breastfeed again. I was at such a loss, I couldn’t tell if we were doing it ‘right’ and, because we were in such a small hospital, the nurses didn’t have very much experience with clefts either. A couple days later we went home with special bottles, cleft team referrals, and some reading material. Avery had lost 12% of his birth weight.

The next couple of days were a blur, I breastfed him nonstop, trying to figure out how to make it work. We didn’t sleep more than an hour at a time since he was always hungry. I could feel that my milk had come in, but after I nursed him, my breasts weren’t any emptier. At five days old he became extremely sick. At the Phoenix Children’s Hospital, he was diagnosed with meningitis and was put on life support. I couldn’t breastfeed him, but when he was able to have food I insisted on only breast milk through a nasogastric tube.

Cleft lip and palate breastfeeding

I spent the next six days researching, reading the very few success stories, and reaching out to anyone I knew with breastfeeding knowledge.

By the time I was able to try nursing again, I was confident that we could be one of those success stories. Our doctors and nurses encouraged me to just bottle-feed but tolerated my attempts to breastfeed. I spoke to a few lactation consultants who were supportive, but couldn’t offer any help. When we went home Avery weighed a pound less than his birth weight but, this time, I was armed with knowledge.

I figured out the one position I was able to breastfeed him: cross-cradled with my hand supporting his head at my breast, while I used my other hand to hand express into his mouth. With every single attempted suckle I would squeeze the milk out for him. I could only nurse him on one breast, so I pumped the other side and donated the extra milk. By one month old, he was finally up to birth weight. It was time to meet his cleft team.

Mothers'Stories_CleftLip&Palate

His cleft team consisted of a surgeon, orthodontist, nurse and a speech and language pathologist who worked as a feeding specialist. They listened to Avery’s entire story, about how he was sick, lost weight, got better, then finally began to gain weight. That didn’t appear to matter to them because they told me to stop trying. It was impossible, it was too hard, and it couldn’t be done. “Cleft babies simply don’t breastfeed.” I left the office in tears. Freshly postpartum, surviving on barely any sleep, and I felt I was being told that I was hurting my baby.

We had another appointment for a weight check arranged for a week later. I decided that I was going to keep trying to breastfeed for that one week, and if he gained weight, I would keep going. If he lost weight or just didn’t gain any, then I would begin to bottle-feed. Seven days later, I was so nervous placing him on the scale, it felt like an eternity before the numbers appeared. To my relief, he had gained! I was thrilled and expected everyone else to be, but they weren’t. Again, I was told that cleft babies cannot breastfeed.

Each week we went back for a weight check. Each week he passed his goal. Each week I was told that it wasn’t good enough, that I needed to stop breastfeeding. Instead, I stopped going to the weekly weigh-ins. I borrowed an infant scale from a local doula, I counted wet and dirty diapers and I nursed my baby what seemed like continuously to give him all the milk he needed.

Through the lack of sleep, hand cramps from round-the-clock hand-expression, and pumping to drain my other breast, I kept going. My goal was simple: make it through the next day. I wanted to quit every single day, but I reminded myself of all the benefits I was giving my sweet boy.

Avery had his lip repair at six months old, then his palate repair at seven. I advocated for myself and nursed him immediately after surgery both times. I was expecting his latch to be perfect after his palate was fixed and I was disappointed when I realized he still couldn’t nurse on his own. I figured he was just getting used to his new mouth and would be able to breastfeed without my help once he was healed. Eight months rolled around, then nine, yet I still had to hand express into his mouth. I finally gave up hope that he would nurse by himself and resolved to continue as we were.

Rachel-Morgan-2

Within the next couple of weeks, he suddenly figured it out on his own. His latch was shallow, but it was a start. I tried the laid-back breastfeeding position while skin-to-skin and, within a couple of days, he went from having no suction at all to learning how to nurse. This is what I had fought so hard for. I cried tears of joy and relief the first time he got a full feed without any help from me.

I did the “impossible.” I breastfed my baby with a cleft lip and palate even though all of the professionals told me cleft lip and palate breastfeeding was not possible. With only the support of the mommies from my local LLL group and my family, I did it. As I sit here with my sweet boy falling into his peaceful slumber with milk dribbling out of his mouth, I see how it was worth every struggle we faced to get here, and look forward to a long, beautiful breastfeeding relationship ahead.

 

Resources

ABM Protocols

Breastfeeding a Baby with Cleft Lip or Cleft Palate

Cleft Lip And Palate Breastfeeding because you can!

Cleft Palate Breastfeeding Video

 

The Power of Hand Expression


Comments

  1. Angelina Itri Says: May 3, 2016 at 12:55 pm

    Rachel, I am a student lactation consultant and I am presenting a project on cleft lip and breastfeeding and the ABM protocol. Would you mind if I used your picture your sweet boy nursing?

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