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August’s Bi-Lateral Cleft Lip and Palate Journey

NOTE: The mother of a current patient shared her family’s story for the Clinic’s Annual Appeal. We could only use a small portion in the brochure, so here is the complete version. Thanks, Patricia and August, for allowing us to be part of your journey!

August’s journey has had a few speed bumps along the way, but through it all August remains a happy and healthy boy.

I knew going in that August was going to be born with a bi-lateral cleft lip and palate, but I wasn’t sure how I would react seeing him for the first time. Of all the birth defects out there, this one scared me the most. It’s your child’s face! How do you prepare yourself for this? How do you prepare your family and friends? How will other people react? These were the questions I asked.

To prep for August’s birth, we were put into contact with the Lancaster Cleft Palate Clinic. They helped ease some of our worries. I also limited my research to just a few pictures, because every child is different, and I didn’t want to overwhelm myself. I located a few pictures that were age appropriate for my children, who were 11 and 6 at the time. I wanted them to understand and ask any questions they might have before and after August was born.

August’s journey began in August, 2017, via C-section. He came into this world at a whopping 9 lbs, 15 oz. I didn’t really get to see August in the operation room because he was taken immediately to the NICU—not because of his cleft lip and palate like many may think, but for a different reason. He had low sugars. He spent close to his first 48hrs in the NICU before joining me on the maternity floor. My husband, children, and his cousins visited him in the NICU.

Once we were home, we ran into a few obstacles. One of the biggest was his failure to thrive. August was having trouble figuring out how to drink. We struggled for several weeks to get on track, and he lost several pounds. This meant many sleepless nights for me, as I had to feed him every 2 to 3 hours and record every ounce he drank.

As the weeks went by, the numbers on the scale finally began to climb. August was finally cleared, and “failure to thrive” was removed from his charts. During this time, we also had visits with a pediatric cardiologist for August’s aortic arch anomaly and patent foramen ovale. After a few tests his heart was cleared, though it will always be monitored and noted in his charts. August failed his newborn hearing test, which for bi-lateral infants isn’t uncommon due to fluid buildup in the inner ear.

We began taping his lip when he was about 12 days old. This process was to help bring his edges together to make surgery a little easier. I created a little taping kit. It contained a small pair of scissors, dermaskin cut into quarter-sized circles, and the specialized tape. We kept the kit in his diaper bag. If the tape ripped, it could be replaced. I was diligent in making sure that August wore his tape daily, only allowing for a break here and there. The taping was working! It was pulling everything together.

Unfortunately, after a month and a half, we had to stop. August had a reaction to the adhesive. It would clear up and come back. Then we had a major setback. The skin tore just below his nose, in the area where his nose and upper lip met. Just like that, the taping stopped to prevent further damage. This was frustrating. We worried that stopping the taping would not help the surgeon enough to place his lip back together.

Surgery number one was set for November 15, 2017, at Penn State Hershey Medical Center. August was just a little over three months old. During this surgery, Dr. Samson was going to perform a lip repair and rhinoplasty, and an ENT (ear, nose, and throat specialist) was going to place in ear tubes. This surgery was supposed to be an in-and-out procedure. Simple enough.

The surgery took longer than expected. August’s lip muscles were tighter than anticipated because of stopping the taping. He was in surgery for about six hours. While he was in recovery, he began having difficulty breathing. They took him to be re-intubated. For whatever reason, August pulled his tube and went into respiratory arrest. The tube was replaced, and he went into recovery again. They kept him sedated and intubated for about three days.

Slowly, August began to recover. Five days after the surgery, we were finally released. His recovery at home began. August was swollen for several weeks. I applied a Vaseline or Aquaphor baby cream to his scab daily to keep it moist and help keep scarring to a minimum.

During our post-op appointments, everything looked good and we were right on track. August again failed his hearing tests. The fluids were still blocking his eardrums. An irritation formed on his nose, too. It ended up just being a skin infection that we treated with an antibiotic cream. It healed up in a week or two.

As we approached his first birthday, it was time to start preparing for surgery number two. We had to wean him off the bottle and onto a sippy cup prior to surgery. The sippy cups could not have nipples. We had to use a flat surface cup to keep things off his palate. They didn’t want anything touching the palate after surgery so that it could heal. I set a deadline of August 24. It took a lot of trial and error, but August figured out his sippy cup prior to the deadline. August was a constant mess while training to drink like a big boy at such an early age!

Surgery number two consisted of having his palate closed and his ear tubes checked. It was scheduled for September 12, 2018. Last time, I went in thinking we would be out the same day. This time we went in prepared to stay three days versus the planned overnight stay.

August was in surgery for close to four hours. Dr. Samson closed the palate and did a little touch up to August’s upper lip. The ENT doctor checked his tubes and replaced his right ear tube. While in recovery, August began to show the same symptoms he experienced after his first surgery. Fortunately, he was older now, and we were able to control his breathing without re-intubating.

The hard thing about surgeries with children so young is knowing when they are in pain and what it is they need. The evening after surgery, we pretty much kept him sedated because whenever he began to wake, he cried and was inconsolable. By the next morning, he started to feel better, and we began to wean him off the pain meds. I had to get him to drink enough fluids to go home. It took all day, but by 7:30 that evening, we were headed home.

The recovery was a little rough. We had a close call at the end of week one when I snagged a stitch on his lip trying to get a shirt off his head. The tough part was three weeks of no crunchy foods. August despised not being able to eat crunchy food and would often reach for our food. He made it through those weeks with just a few tears.

August still has a long way to go, but he is a happy and healthy 15 month old. He is finally beginning to walk, and he is starting to chatter more. His hearing has seemed to improve, though we recently had a tube fall out, which means another surgery may occur sooner rather than later. Speech therapy will begin soon so that he can start to form some words. His only word—and the one he loves to yell—is “Momma!”

As we continue this journey, I know the staff and doctors at the Lancaster Cleft Palate Clinic will have his back.

—Patricia, August’s mom

Nonprofit organization seeking Director of Development

The Lancaster Cleft Palate Clinic is seeking a highly motivated and energetic candidate for the position of Director of Development.  LCPC is an independent nonprofit organization, founded in 1938, that provides multidisciplinary medical and dental care for infants, children and adults with cleft lip, cleft palate and other craniofacial conditions.  The clinic is the first of its kind in the world and created the model of “team-based” treatment planning for cleft care.

LCPC treats approximately 2500 cleft and craniofacial patients annually.  The clinic is an active research site and houses orthodontic, surgical and psychosocial clinical outcome projects. The clinic is also the site of active nonprofit dental practices in pediatric and general dentistry, orthodontics, and maxillofacial prosthodontics for cleft and non-cleft patients in Lancaster and the surrounding communities.  All proceeds of dental care support the primary mission of the clinic.

The ideal candidate will have a minimum 3 to 5 years of development experience in a nonprofit and/or healthcare setting.  Superior interpersonal and writing skills are a must. The Director of Development will report to the Executive Director and work collaboratively with other team members to achieve annual fundraising goals for the clinic.  Compensation will be commensurate with experience.  Benefits may include medical insurance, disability insurance, a 401K and discounted dental care. A flexible work schedule may be arranged.  Interested candidates may contact scott@tristarrjobs.com.

 

Primary Responsibilities:Position is responsible for the overall planning, execution and assessment of the Clinic’s development program in support of its mission and programs. This includes:

  • Articulating and fulfilling the organization’s mission through appropriate philanthropic activities, programs, and communication.
  • Cultivation, stewardship and relationship management with multiple constituencies: current donors, former major donors, grateful families, board members, former board members, staff, business & corporate representatives, community leaders, foundation representatives, political leaders and other non-profits.
  • Capital, annual, grants/grant writing, government support, major sponsorship and special project campaigns.
  • Endowment, major and deferred gifts.
  • Volunteer recruitment, stewardship, cultivation and major gift solicitation training.
  • Oversight and coordination of a comprehensive development program: Goal setting, calendar, focus, activities, budgeting, special events, donor database management, programs, publications and annual performance assessments.

Principal Duties:

  • With a special emphasis on major and planned gifts, the Director of Development works with the Executive Director, Board members, other staff members, and the broader LCPC community to manage, cultivate, plan, request and steward philanthropic support for the organization.
  • Leads the monthly “Major Gift Team” meetings and meets regularly each month with the Executive Director, former Executive Director and others to set annual, major gift, foundation and deferred gift prospect priorities and activities.
  • Works with a Board Development Committee and Executive Director to sustain and grow the overall Major Gift and Planned Gift development efforts of the Clinic.
  • Is responsible for developing, marketing and executing a comprehensive program to secure Deferred Gifts.
  • Is responsible for updating, modernizing and streamlining Development Office operations, policies and procedures to create a professional and comprehensive development office (including managing a donor and patient “alumni” database in GiftWorks).
  • Oversee communications/cultivation/stewardship programs that include development of a quarterly newsletters and overseeing active social media efforts.
  • Is responsible for articulating and adherence to the Gift Acceptance Policies and Procedures of LCPC.
  • Is responsible for leading research efforts to identify potential new major donors (all constituencies) and grant opportunities for the LCPC and working with staff and volunteers to build and nurture relationships with them for the well-being of LCPC.
  • Is responsible to maintain and enhance the LCPC’s image in the greater Lancaster County community and support the LCPC mission in all activities, publications and events.
  • Other duties that are deemed appropriate for the Clinic.

Lancaster Cleft Palate Clinic Appoints New Executive Director

Elizabeth PradaLANCASTER, PA – Elizabeth K. Prada, DMD, MPH has been named Executive Director of the Lancaster Cleft Palate Clinic by David B. Hanson, Chairman of the Board of Directors. She previously served the 79-year-old nonprofit health organization as its Clinical Director.

Dr. Prada succeeds Ross E. Long, Jr., DMD, MS, PhD, who has led Lancaster Cleft Palate Clinic since 2000.  Dr. Long will continue as the Clinic’s Director Emeritus and as a member of its medical and dental staff.

“After a multi-year search, our Board is delighted to entrust the next chapter of our nearly 79-year story of service to Dr. Prada,” said Hanson. “She embodies the medical skills, leadership talent and missional heart so essential to our next decades of service to our region, our patients and their families. We thank Dr. Long for his innumerable contributions over the years and for his willingness to help carry on a tradition begun in 1938 by his grandfather, Dr. Herbert Cooper, and his father, Dr. Ross Long, Sr.

Dr. Prada joined the Lancaster Cleft Palate Clinic as a member of the Cleft Palate team in 2013. She was instrumental in the founding of the Clinic’s Lime Street Pediatric Dentistry.

Dr. Prada is a board-certified pediatric dentist who has been in practice since 2009. She earned a Bachelor of Arts in Biology and Public Policy in 2002 from Duke University. She completed dental school at the University of Pennsylvania with honors in 2006. She  continued her studies at the University of North Carolina at Chapel Hill where she pursued dual specialty training in Pediatric Dentistry and Public Health. There she earned a Master’s degree in Health Care Policy and Management in 2008. She completed her residency at UNC Hospitals in 2009.

Dr. Prada is a member of the Department of Surgery at Lancaster General Hospital and the Penn State-Hershey Children’s Hospital. She is also a faculty member for the General Practice Residency Program at Lancaster General Hospital where she teaches pediatrics to general dentists.