La Farge Medical Clinic - DDC Clinic for Special Needs Children

La Farge Medical Clinic
An Alternative Model for Care of Children with Genetic
Disorders
James DeLine, MD
LMC History
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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%
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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
• Hirschsprung disease
• Rett syndrome
• Amish albinism
• Hypothyroidism
• Cartilage-hair hypoplasia
• Severe combined immune
deficiency (IL7Rα)
• Hypertrophic cardiomyopathy
(MYBPC3 mutation)
• Severe combined immune
deficiency (RAG1)
• Lethal neonatal rigidity and
multifocal epilepsy (suspected • Symptomatic epilepsy and
skull dysplasia (SNIP1 mutation)
BRAT1 mutation)
• 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
• Long QT syndrome
• Troyer syndrome
• Maple Syrup Urine Disease
(8)
• Von Willebrand disease, type
2M
• Methylmalonic Aciduria and • Yoder dystonia
homocystinuria, cblC type (3)
• Nemaline rod myopathy
(chicken breast disease)
• Phenylketonuria (7)
• Primary ciliary dyskinesia
• Propionic acidemia (10+)
(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 outof-hospital births" The Journal of Pediatrics on MDLinx.com
Estimating the number and understanding the characteristics
of Amish births in Wisconsin
[email protected]
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
[email protected]
608-532-6464