La Farge Medical Clinic

An Alternative Model for Care of Children with Genetic Disorders

James DeLine, MD

LMC History • 1983 - solo practice started

serving rural underserved area in SW Wisconsin

• 1988 - first partner added • 1992 - clinic expansion

(birthing center begun 1993) • 2004 - third full time

practitioner added • 2004 - joined Vernon

Memorial Healthcare • 2014 - recruiting for 5th full

time provider; beginning new clinic construction

Plain Community • First Amish moved to

Cashton 1960’s • Trust built over years of low

cost consistent care • Birthing services for plain

community started in 1993 • Currently 18% of patient

visits are for plain community

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OB Program

1993 - started after years of assisting with OB complications Currently 80-100 births per year, including twins, VBACs,

breech CS rate 4% in first 1000 births Currently midwife care with MD backup

Current Practice & Demographics

Overall 15% patient visits are with plain community members

• For me, figure is 22%

Obstetrics 27%

Trauma 16%

Illness 50%

Routine (HTN, DM med renewal, pre-op) 6%

Collaborations

Vernon Memorial Hospital (25 bed community hospital) Teaching site for UW medical and PA students throughout

our history Primary referral centers - UW and LaCrosse Lutheran Specialty genetics clinic (CSC,DDC)

Proposed Structure

Care for children with genetic disorders will be integrated into practice

Goal is: full time pediatrician on staff dedicated to care of children with genetic disorders

Strong relationship with partners

Periodic clinics with consultants

Inherited Diseases Found in Wisconsin Among Plain Populations

• Aldosterone deficiency

• Amish albinism

• Cartilage-hair hypoplasia

• Congenital Adrenal Hyperplasia (3-β-OH-steroid dehydrogenase deficiency)

• Crigler-Najjar syndrome

• Cystic fibrosis

• Ellis-van Creveld syndrome

• Fragile X syndrome

• Galactosemia (Duarte variant)

• Glutaric aciduria, type 1 (1)

• Hemophilia A – Factor VIII deficiency

• Hemophilia B – Factor IX deficiency

• Hirschsprung disease

• Hypothyroidism

• Hypertrophic cardiomyopathy (MYBPC3 mutation)

• Lethal neonatal rigidity and multifocal epilepsy (suspected BRAT1 mutation)

• Long QT syndrome

• Maple Syrup Urine Disease (8)

• Methylmalonic Aciduria and homocystinuria, cblC type (3)

• Nemaline rod myopathy (chicken breast disease)

• Phenylketonuria (7)

• Primary ciliary dyskinesia

• Propionic acidemia (10+)

• Rett syndrome

• Severe combined immune deficiency (IL7Rα)

• Severe combined immune deficiency (RAG1)

• Symptomatic epilepsy and skull dysplasia (SNIP1 mutation)

• Troyer syndrome

• Von Willebrand disease, type 2M

• Yoder dystonia

(Source: Numbers from metabolic patients followed at UW clinics, diseases from observation/communication with those involved in the Wisconsin Amish Project)

New La Farge Medical Clinic Design

Relationship with Midwifery Community Lay Amish midwives (also source for medical care)

Non-Amish CNMs (experiences with Amish enhance care to all populations)

Newborn Blood, Hearing and Heart Screening in Plain Communities in

Wisconsin

Gretchen Spicer CPM LM Retired Paramedic I practiced for 14 years and helped with about 700 deliveries, mostly for plainclothes families. I believe that place of birth should never affect access to newborn blood, hearing and heart screening. I believe that all families deserve unbiased prenatal education on newborn screening and access to all three screenings in a manner that is convenient, affordable and culturally appropriate.

>2% WI deliveries are out-of-hospital More than 1/2 are Plainclothes Families About 880 of 1400 per year from 2005-2009*

Plainclothes Families in WI Choose: Licensed Midwives Clinic Births (mainly La Farge) Community Midwives Unassisted Deliveries *Estimating the number and understanding the characteristics of Amish births in Wisconsin, Rohan et al

Licensed Midwives/La Farge Clinic Began blood screening 1970s Hearing screening 2005 Heart Screening 2013 Currently at least 90% of plainclothes families choosing delivery with LMs or La Farge Clinic get all three newborn screenings

Prior to Dr. Morton’s visit to WI in October of 2012 Plainclothes families choosing Community Midwives and unassisted deliveries were getting some blood screening, very little hearing screening, and no heart screening

From Dr. Morton’s visit until now:

Wisconsin Partnership Program and Impact Award Grants 7 trainings for Community Midwives held on newborn blood, hearing and heart screening 1 Community Midwife began doing blood, hearing and heart screening for most families 5 additional Community Midwives began or increased blood screening 7 Community Midwives were given pulse oximeters and began heart screening 2 Public Health Departments began doing all three screenings for most families OOH NBS position created to coordinate NBS efforts and training and serves as a back-up screener for OOH births

Ongoing Efforts to Increase Newborn Blood, Hearing and Heart Screening in Plainclothes Communities Community Meeting in Augusta with Dr. Holmes Morton 10-21-2014 Midwives Training in Augusta 10-22-2014 Continuing collaborations with Public Health Departments to provide all 3 newborn screenings (Meetings in 3 locations representing 11 counties) Regional Screener Pilot Updating Plain Talk about Providing Healthcare document Community genetic survey newborn screening questions

Resources and Publications Screening Hearts In Newborns (SHINE) website http://wisconsinshine.org "Pulse oximetry screening for critical congenital heart disease in planned out-of-hospital births" The Journal of Pediatrics on MDLinx.com Estimating the number and understanding the characteristics of Amish births in Wisconsin angela.rohan@dhs.wisconsin.gov Plain Talk About Babies http://www.waisman.wisc.edu/info-families.htm (The last entry under “Outreach Activities”) Three Screenings for Newborns Handout Plain Talk About Providing Healthcare to Plainclothes Populations Department of Health Services Plainclothes NBS Booklet

Acknowledgements The work we are doing in Wisconsin to increase newborn blood, hearing and heart screening in Plainclothes Communities could not be done with out generous funding and support from:

Impact Grant Award Wisconsin State Laboratory of Hygiene Wisconsin Sound Beginnings Wisconsin SHINE program Wisconsin Department of Health Services

For more information or to get copies of Plain Talk About Babies, Three Screening Handout or DHS

Plainclothes NBS Booklet contact:

Gretchen Spicer CPM LM 7080 Leaches Crossing Road

Avoca WI 53506 grestchenspicer@gmail.com

608-532-6464