Extra Digits on Hand at Birth and Increasing Appetite Later Discovered To Be Laurence Moon Syndrome

Carleigh Haven entered our world on August 9, 2006 via C-Section. She was 6 lbs 13 oz and was 21 inches long. I had no complications throughout my pregnancy. When the nurses wheeled me back into my room, there sat Chad holding his beautiful baby girl. He was so proud. He walked over to me with her and said, “she has 11 1/2 fingers.” It was kinda neat. And the doctors informed us that it was not a concern because there was no bone.

The doctor recommended we would tie the extra digit with string and it would simply fall off. The extra digits were on the outside of her pinky’s. The 1/2 digit was simply a bump. It had not completely formed into a full digit. You can see her extra digit in her hospital picture and its tied off with string. This extra digit fell off within the first week of having her home. But it left lumps on the outer sides of her pinky’s.

Her Primary Care Physician (PCP) recommended cosmetic surgery to remove the bumps if Carleigh ever got self-conscious about them. Chad and I decided when she was 9 months to go ahead and have the procedure done. She now has scarring, but its not noticeable unless you know what to look for.

We had issues with formula digestion with Carleigh.  After months of trying new formulas, her PCP told us she was lactose intolerant and required a formula called Nutramigen with Lipil. Once we made this transition, she began to gain weight and seemed to be a happy baby. Carleigh had constant ear infections. It seemed every time we turned around she was sick.  When Carleigh turned age two, we saw an ENT at Lake Regional who sent us to another specialist in Jefferson City for blockage in her nasal passages. He recommended the removal of her tonsils and adnoids. We scheduled that surgery and it was successful in putting an end to her ear infections. The next two years we were ear infection free!

At age 4 1/2, we began to notice Carleigh’s hefty appetite. The kid was constantly hungry. And the weight began to pile on. We restricted sugar intake and monitored meals. But it got to the point where she would sneak food. We scheduled a visit to her PCP and he referred us to a Pediatric Endocrinologist in Springfield.

We met Dr. Schwartz in March 2011. He was very nice and made us feel at ease. He examined Carleigh from head to toe. After completion of his examination, the first question he asked us was, “Was Carleigh born with extra digits?” We were shocked. No doctor in all her five years had ever asked us this. Then came the explanation/diagnosis of Laurence-Moon Syndrome.

Dr. Schwartz said that both Chad and I were the carriers of the defective gene responsible for causing Laurence–Moon syndrome and the chances of having another child with the same syndrome was 1 in 4. Dr. Schwartz ordered us to have an ultrasound done of her kidneys, a vision examination with a pediatric opthamologist. We also met with a dietician to create a diet regimen for Carleigh.

Laurence-Moon Syndrome has no cure; therefore, treatment focuses on managing the symptoms.

• Vision impairments – Low vision aides and mobility training are beneficial
• Obesity – A dietician can work with the family to create an appropriate diet regimen
• Speech disorder – Speech therapy can help children with their communication skills and parents can be taught exercises to use at home to improve their child’s ability to communicate
• Kidney problems – There are several types of kidney problems associated with LMS and the treatment varies accordingly. Kidney issues can be treated with medications and in rare instances, surgery (transplantation)
• Polydactyly – skin tags can be tied off at birth and extra digits can be removed surgically

Carleigh’s ultrasound of her kidneys came back normal as well as her vision screening. She had a 6 month follow up with Dr. Schwartz and he was pleased with her being able to maintain her previous weight. She also was getting taller.

As a mother, I am fearful and can not help but blame myself. Although, I know its not my fault, I still feel the need to. Carleigh is a very bright little girl full of spunk. She only shows two of the primary features associated with Laurence Moon, which are Polydactyly and Obesity. But not all children will exhibit all features.

Through internet research, I have realized that we are not alone. Many others have been diagnosed with LMBBS. And there are even support groups for parents and loved ones. And although, the past 5 years have been full of ups and downs, I am thankful. God has been good to us and we have had great results in regards to her testings.

I could not imagine my life without Carleigh Haven. She is such a blessing and I know she will overcome this disease. We will overcome this. Just because we have a child with Laurence-Moon, does not mean the world ends. She can and will do anything she sets her mind to.