Having a cleft baby can sometimes mean that feeding is going to be complicated. If your baby is born with a small cleft lip only it may be possible to nurse. Should your baby be born with a cleft palate, nursing is going to be a much more difficult option.
At 17 weeks pregnant, we found out through ultrasound that our baby boy was going to be born with a bilateral cleft lip and palate. We were told that he was going to suffer initially from feeding issues and that nursing him at the breast was most likely not going to be an option due to the inability to suckle. I’m not going to lie. I was pretty upset about all of this information and being told that I was not going to be able to breast feed my newborn was disappointing and made me really really sad. I had breastfed my first child and I had anticipated doing the same with this child. I had visions of sitting in the nursery in his rocking chair holding him and spending that mommy time with my baby. I cried at this loss because it was a loss for the both of us.
I feel like knowing in advance really gave me time to prepare mentally for all that was to come. I could only imagine what we were going to experience but having information beforehand and being able to talk to someone who had recently gone through the trials and errors of feeding a cleft affected baby helped me to not dwell on what I could not do but to focus on what it was I would be able to do. Even though I would not be able to physically breastfeed my newborn baby I still wanted our baby to have all of the benefits of breast milk so I prepared beforehand with our insurance to cover the rental of a breast pump and I made sure to have everything I needed at home to prepare for that.
We found out that our baby was going to have to stay in the NICU (Neonatal Intensive Care Unit) immediately after being born and that a feeding tube would have to be inserted through his tiny nostril. I was able to pump and give the nurses breast milk to store in the refrigerator in the NICU. They would feed him the breast milk through the feeding tube until we could begin working with an Occupational Therapist (OT) to learn to bottle feed him.
The OT met with us twice a day in the NICU to teach us how to bottle feed our son. My husband was much better at this than me. I was scared I was going to drown him or not do it right so it took me a little longer to get the rhythm of it down but the OT was patient and wanted to make sure we were comfortable and could do this. It was a lot of work for our baby to feed and he would tire out pretty quickly. It took a few days for him to catch on but he was a hungry little guy so he was working hard to figure out how to get that milk into him!
Even though feeding my baby was not as easy as feeding a typical newborn it became our norm and was the only norm our little guy knew. I still got to make sure he was getting breast milk as that was important to us. You may be nervous at first about how complicated it all sounds but you really do figure it out and with all of the help around you at the hospital and the wide array of special cleft palate nursers available, feeding does happen. Plus, they won’t discharge baby from NICU until the OT and nurses are satisfied with the ounces he’s taking in and the level of comfort they can see with you feeding. Definite motivation!