ACPA Family Services

Cleft-Craniofacial Community Stories

The Dodds Family

I write to you today to share our experiences in having a baby born with cleft palate in July, 2001. I think it is important to share with others our personal experience in caring for a child with such a birth defect.

Matt, Alyssa (6), Amy, Lindsay and Whitney (3)
at Christmas Dinner

To begin with, I am here to tell you and others that both my wife and I were very naïve regarding the diagnosis that our wonderful, seemingly normal child was born with a complete cleft of both the hard and soft palate. At first, it really did not sink in, as what information we did receive initially made it sound very simple. Take her to a specialist, sew up the hole in her mouth, and off we go raising a “normal” child.

I am here to tell you, it did not take long for the reality to set in.

The day we were to bring home our beautiful newborn, she had a horrible choking incident. Thankfully, the nurse was holding her at the time and got her breathing again. This set the stage for our next few days of eye- opening experiences. The drive home from the hospital was not marked with the happiness my wife and I felt when we brought the other two children home. We were both very scared and too afraid to admit it. Here we had this child with a birth defect we knew very little about, and we knew even less about how to take care of her.

Our frustrations included getting very little information, and often incorrect information, from our small town hospital. The hospital told us to breast feed, which we wanted to do anyway. However, an average feeding was taking longer than two hours, resulting in a baby who did nothing but sleep due to working so hard to get milk. Our daughter had two other “choking” incidents when she was laying on her back—we were fortunate to be at the right place at the right time in both cases. We were also concerned about our daughter’s hearing, possible syndromes related to cleft palate, and speech problems. Certainly, our fears and concerns continued to grow as my wife and I tried to find every bit of information we could on cleft palate and the care of children with this condition.

Shortly after coming home from the hospital, we got our big break. We heard of the Cleft Palate Foundation through an acquaintance of my mother and called the 800-24-CLEFT number. I will never forget the initial call answered by Dan at CPF. I explained our fears and the problems we were having, and Dan was able to walk us through all of our questions regarding feeding, as well as immediate and future care. As I remember it, Dan talked to us for over 45 minutes that day. I can tell you truly that immediately after that phone call, our lives, and most importantly our daughter’s life, changed. We switched to a cleft bottle, and our daughter immediately began to gain weight. Her feedings went from over two hours by breast to 45 minutes by bottle. Within a couple of days of practice, we had it down to 30 minutes using her cleft bottle. Her sleep habits immediately changed as well. She was no longer sleeping all hours of the day with exhaustion from trying to breast feed. I am not advocating against breastfeeding, but in our case the cleft bottle was clearly the best choice.

In conclusion, I am happy to report that our child is doing extremely well. My wife and I have adapted to our “bundle of joy,” and feeding is not even an issue anymore. We have our daughter under the care of a very talented cleft palate team, and we expect a full recovery over the next couple of years. We are almost certain that Lindsay is hearing now, and although this cleft palate defect is something we will continue to receive care for, we consider our child to be completely normal.

My message to any new mother or father of a child with a cleft is to search for any and all information available, work closely with this wonderful group of dedicated people at CPF, and understand that every day will get easier for you. Often people would comment on Lindsay’s health with concern, but in my opinion, WE were the ones who had the issues to deal with. My daughter knew nothing different, and in her eyes, she was always normal.

Last Updated: Sep 19, 2007