ACPA Family Services

Cleft-Craniofacial Community Stories

The Hopkins Family

Jim and Chris Hopkins’ Story — Providing Breastmilk to an Infant with Cleft Lip and Palate

Rachel & Cole

It was a shock to hear that our baby would be born with a cleft lip and possibly a cleft palate. We were heartbroken, but we always knew it was a possibility because both Jim and his cousin were born with a unilateral cleft lip. We had visited our plastic surgeon prior to the birth and because we had full confidence in him, it made the thought of our son having several surgeries much easier to accept. As our due date approached, we were excited to meet our new baby, but apprehensive to see the severity of his defect and the new challenges we would be up against. On May 23, 2001, Cole was born with a bilateral cleft lip and palate and unable to breastfeed.

We truly believed in the health benefits of breastmilk, so we had made the decision to pump and supplement with formula. We were told that I should be able to pump for about four months, but it was possible to go longer. Since Cole would be scheduled to have three surgeries within his first year, we made it our goal to give him breastmilk through all of them.

We initially rented a hospital grade pump, then purchased a portable one. Since Cole was physically unable to breastfeed, we thought it was a medical expense that should be covered by insurance. Along with our insurance claim, we sent a letter of support from our pediatrician. Armed with a magazine article stating that, on average, breastfed babies cost less in medical expenses their first year, we were ready to argue coverage for this expense. However, our insurance covered 100% of the rental and over 50% of the purchase price of the portable pump.

The first few months were challenging trying to coordinate feeding, pumping, and caring for our four-year-old daughter, Rachel. But, with a little creativity, we did it. During the day, I would read with Rachel or sing to Cole while I would pump. Through the night, I would wake up with Cole, feed him, then pump for his next bottle. On the weekends, Jim would help in the twilight hours by feeding while I would pump. Then, at about 4 months, he was able to hold the cleft feeder and feed himself by chewing down on the nipple of the bottle. At this point, I was spending the same amount of time feeding as a parent of a baby without a cleft palate.

Before Cole was born, our parents had planned a family trip to Walt Disney World. After considering our feeding challenges, we didn’t think that we could make the trip much less enjoy it. Cole would be four months old and trying to feed him and pump at a theme park sounded like anything but a vacation. But with a little research, we found it could actually be done. We purchased a car adapter for the pump. In addition, the Disney Parks had Baby Services, a location within the parks that would store my pump and provide a nursing room.

As we approached Cole’s first birthday and the surgery that would close his palate, we began storing one bottle each day. We knew he would be on a liquid diet for 10 days post op and wanted to give him as much breastmilk as possible. And it proved to be a good idea. Breastmilk was the only food Cole wanted during those first few days after surgery.

Cole has always been a healthy child. He is usually in the 90th percentile for height and weight and has had only two ear infections and a few minor colds. Whether or not it was the breastmilk that helped him, we were thankful for being able to give it to him.

Having a child with a cleft lip/cleft palate adds unusual challenges to those that you normally face with an infant. Together, they many seem overwhelming, but with creativity, determination, and persistence, each situation can be overcome.

Last Updated: Sep 19, 2007