Having a child born with a bilateral cleft lip and palate is difficult, especially when considering the extra work that goes into feeding.  Your baby will initially be in in the NICU (Neonatal Intensive Care Unit) of your hospital right after being born.  A feeding tube will be inserted through one nostril and will go down the back of your baby’s throat and into his stomach.  The nurses will attach a syringe and push formula or breast milk through that tube and into your little one due to his/her inability to suck, which is in direct correlation to their cleft palate.

After the first day in the NICU an occupational therapist (O.T.) visited us and worked with my husband and I to learn how to feed our baby with a cleft palate nurser.  Ours ended up being a squeeze bottle with a regular nipple that we were instructed to cut in the form of an “X”. This crosscut in the nipple would make it easier for our baby to get the milk out of. Each day the O.T. came and worked with us to get into a rhythm with our baby and to be able to pay attention to our baby’s breathing while feeding him.

This process was difficult for me. I had breastfed my daughter and really wanted to be able to have that same bonding with our son. I knew this wasn’t possible because of the cleft palate but I was upset about it anyway. It felt as if there was just yet another thing I was having to miss out on with my baby that was out of my control and I longed to hold him and just be able to feed him like a normal mother should.  I would cry when seeing the feeding tube and my emotional ups and downs seemed to have a mind of their own at this point.

My husband actually got the whole feeding rhythm with our son down early on and took the lead on that. I concentrated on pumping and upping my milk supply so that we could feed him breast milk versus formula.  It was hard for my milk supply to stay up because I wasn’t having direct contact with my baby for feedings so I drank Mother’s Milk Tea to help and made sure I drank plenty of water.  I also pumped every time my son needed to feed while my husband was the one to actually feed him.

The O.T. informed us that until our baby could get 3 oz. of  breast milk through feeding him with the cleft palate nurser on his own (showing her that his oral muscles were getting stronger and that his need for the feeding tube was no longer) that only then could we be released from the NICU.  It took 7 days.  It seems our little one was determined to eat and get home as soon as possible.

While feeding a cleft palate baby is different and requires you to hold your baby upright and to really pay attention to their rhythm, it still allows for you and your husband to be able to bond.  Your baby needs to eat and being able to do that no matter how alternative the method might be, is still something only you, as parents can do.

And while you might be trying to figure out if you should pump or just formula feed I can only tell you that the decision is yours to make.

Our reasons for continuing to pump and get breast milk into our little one is that I truly do believe it is better for baby.  I also did a great deal of research and read that cleft babies that are given breast milk tend to have less frequent ear infections and recovery time after surgeries is less.  For these reasons we opted to rent a dual breast pump that our insurance did cover for as long as we needed.  Yes, feedings were difficult, especially when my husband went back to work because I would be feeding baby and as soon as he was done and down for his nap I was pumping for the next feeding.  There was not a lot of time for sleep but I do believe that the breast milk was just better for him.  I had also read that you could give your baby breast milk almost right up until surgery whereas a formula fed baby has to stop feeding at midnight.  You can imagine how hungry baby would be before surgery and definitely after!

So I strongly suggest that you research and read as much as you can about breastfeeding and decide whether or not it is for you and your family.  I did feed him all night up until a few hours before surgery per our surgeon’s instructions (be sure to speak with your surgeon about this to confirm) and he slept as they took him in for surgery.  Once he woke up after surgery he was not at all cranky or hungry so for us we felt like being able to feed him and make him as comfortable as possible throughout the process was huge for us.  I would also rub a little breast milk onto his incision to keep it moist and help it to heal.

Feeding initially will be a daunting task, but as you and your  little one get into a rhythm it will become natural and your family’s new normal.

For further reading on extended nursing and its benefits:

www.katherinerosman.com/extended-breastfeeding

tdowell22

I live in SoCal with my husband and two kids. Love reading, writing, being a foodie and coffee aficionado. I support other moms of cleft affected children. Our family is continuing along on this journey and we seek to help other families navigate terrain we've already covered. All Smiles is what we want for all cleft kiddos!