Kailyn’s smiles, Kailyn’s strength

newborn-cleft-lip
Photo credit: Samantha K Photography

On April 1, 2012, my husband Kevin and I found out we were expecting our second baby. We were very surprised as our daughter Kendall was just seven months old at the time. At the same time, we were very excited we would have two kids so close in age.

At our 20-week ultrasound, we had another surprise — this baby had a cleft lip.

We were pretty upset when we left the ultrasound. We couldn’t stop asking, “Why us? What did we do wrong?”

We were sent for a 3D ultrasound to confirm what we already knew. From there we were referred to the Cleft and Craniofacial Center at Boston Children’s Hospital. We had a fetal MRI and met with Dr. John Mulliken and his team.

cleft lip
Kailyn and Dr. Mulliken

Learning about cleft lip

They showed us pictures of what our baby’s cleft would look like and also showed us the special bottles we would use to feed our new baby. They assured us everything would be OK. That’s when we knew — our baby would be in the best hands.

Kailyn Marie was born on November 15, 2012. Her cleft was more involved than we initially expected; she had a pretty significant gum notch. She was still beautiful, she was healthy, and she was all ours.

Kailyn was even able breastfeed despite having a cleft. We met with Dr. Mulliken when Kailyn was just five days old, and they scheduled her first surgery (lip adhesion) for December 26, 2012.

Kailyn was just six weeks old when we handed her over for her first surgery, but she did so well. She had a second surgery complete cleft repair, at six months of age. She recovered from both surgeries without any complications.

Her most recent surgery this past May was to remove some extra scar tissue.

Kailyn is three years old now and has had three surgeries. She is one of the strongest and most resilient kids we know. She always knows how to make us all laugh.cleft-lip

As scared and nervous as we were when we initially found out our baby would have a cleft, I wouldn’t change our story. Kailyn’s strength and determination has made us stronger as parents. Looking back, I wish I could tell my pregnant self, “See! Everything will be OK!”

We have connected with so many other cleft parents through this journey, and now we are able to provide the words of comfort that were once provided to us to other families.

We tell ourselves, “It could always be worse.” Kailyn is a healthy and happy kid. We are less than an hour away from Boston Children’s Hospital, Dr. Mulliken and the Cleft and Craniofacial Center.  We have met families that travel from all over the U.S. who come to Boston for their child’s care. We are very lucky to be so close.

Although Kailyn will most likely have a few more surgeries, her cleft doesn’t define her. She is strong, she is brave, she is resilient. She is more than a cleft. She is Kailyn.

Learn more about how Boston Children’s treats children with cleft lip.

 

cleft-lip-familyAbout the blogger: Michelle Riley is an emergency room nurse and the mother of three girls ages 2, 3 and 4. Her family lives in Beverly, Massachusetts.