Donnie Boy Brings Joy to All

When you see three-year old Donaven, affectionately known as Donnie Boy, your heart is immediately filled with joy and happiness. He just has a magical quality. 

The little guy was born on December 2, 2020, to Stevie Kahre and her husband Chris Kahre, and entered the world with a surprise: he was missing his left ear.

“Donaven is fearless. He works hard and he actually does everything to the extreme. He has brought so much joy to our lives. He has taught me so much in the three years he has been on this earth. I am lucky to be his mom,” said Steive Kahre, who is 42 years old.

"Donaven is fearless," says his mom, Steive Kahre

 

Donnie Boy is now on a new medical journey, thanks to his grandparents, aunts, uncles, great aunts and great uncles. Multiple generations are teaming up to help Donnie Boy, who was born with unilateral microtia and atresia. Microtia is a congenital deformity that affects the outer ear. Atresia refers to the absence or closure of the external auditory ear canal. These conditions often come with middle ear deformities and hearing loss. Donnie Boy was also born with slight hemifacial microsomia affecting his left side. This is a condition where one side of the face is smaller or underdeveloped. 

Multiple generations are teaming up to help Donnie Boy 

 

Despite these challenges, The Don is a spunky little guy. He has near-perfect hearing in his right ear and wears a bone conduction hearing aid on his left. 

“Donnie has been a constant ray of sunshine for his family and for me. He always has a pleasant and cheerful demeanor. You can tell he is well loved and cared for. He is an inspiration to all with hearing and facial anomalies and how to thrive and overcome any obstacles related to his condition,” said pediatric specialist Dr. Stephen Walther, who is Donnie Boy’s doctor.

Donnie Boy and his mom in their Microtia and Altresia Awareness Day shirts

 

New 3D Technology Sharing Sounds of Joy

This September, Donnie Boy will visit Dr. Yusuf Tahiri in Beverly Hills, California, for a much-anticipated procedure. Dr. Tahiri specializes in 3D Polyethylene Implant Ear Reconstruction, also known as 3D-MEDPOR™ Ear Reconstruction. In addition to this, he will undergo surgery to place a bone conduction implant, which will further enhance his hearing on his left side. 

In recent years, 3D (three-dimensional) templates have replaced traditional 2D (two-dimensional) templates for microtia ear reconstruction. 3D ear reconstruction not only improves the accuracy of the reconstruction but also reduces surgical time and therefore reduces the length of anesthesia. Dr. Tahiri says the risk of fracture of the implant is now eliminated with the 3D polyethylene ear implants.

The 3D polyethylene ear implant is biocompatible. It is an inert material that has a porous quality allowing tissue ingrowth. The cells and blood vessels of the patient integrate with the porous implant. Donnie will spend September 23rd through October 22nd in California for his surgeries and subsequent recovery. He’ll have multiple appointments and a long road of healing ahead.

Donaven entered the world into a loving family

 

The Don Enters the World

“I did not know during pregnancy; I was considered a geriatric patient since I was 38 years old. I had multiple ultrasounds and never once was it discovered,” said Kahre. “I had a C-section because Donaven was breech. I didn't see him at first. When they brought him to my face, ironically, I told my husband, ‘he has your ears’”. 

She said her husband and stepson both have cute little folded ears at the top. However, Chris told her the baby did not have a left ear.  “When I saw him for the first time, I honestly was very sad, not only was he missing his ear, but he had a slightly deformed jaw. I didn't know what to think. I had a million things run through my mind about his future, whether or not he was completely deaf.” 

The doctors and specialists did an amazing job, said Kahre. However, it wasn't until she did her own research and sought out groups on Facebook, did she learn the most. “I found other parents and people who were affected by microtia and hemifacial microsomia. All of my worries were put to a slight ease knowing he wasn't alone in this world,” said Kahre. 

Microtia, a congenital ear defect that can range from mild to severe, affects between 1 in 3,800 and 1 in 10,0000 births in the United States. Hemifacial microsomia is a congenital craniofacial defect that affects between 1 and 3,500 and 1 in 5,600 live births in the United States. Both conditions can occur in isolation or together. 

“Having a child like Donaven has opened my eyes to a whole new world,” said Kahre. “I realized very quickly we were lucky to live in Missouri. The programs for children with special needs are outstanding. We also have four of the top deaf education schools in the nation.”

Donnie Boy was enrolled at the Moog Center for Deaf Education in St. Louis, Missouri, at 18 months old and continues to go there. He will transition to the public school this January. Kahre has watched him persevere through learning, working hard at audiology appointments and speech therapy.  She said everyday she realizes in new ways how lucky and blessed she is. “He has been through multiple doctor appointments. He is always happy. I have met some of the most amazing educators and parents of children with all kinds of different diagnoses.” said Kahre.

Thanks to a golden age in medicine, technology is bringing hearing to those who previously had very few options. “We are fortunate to live in a time where information and knowledge is widely available to be disseminated and parents can find information, support, and medical providers more easily to care for their medically complex children,” said Dr. Walther. “I fully support the idea of finding the best solution for the medically complex child through research, second opinions, and travel to medical epicenters for specific conditions when appropriate.”

John Schieszer is an award-winning national journalist and radio and podcast broadcaster of The Medical Minute. He can be reached at medicalminutes@gmail.com