Helpful Tips for Families of Preemies
Preemies Today has developed a list of resources to support families of preemies from their time in the NICU through childhood. This is not an exhaustive list of all providers, but ones our members have used now or in the past. Your healthcare provider is a great resource for finding doctors and medical support, and always check to be sure the resource is a good fit for you and your preemie by asking questions about your particular situation. Also, be sure to find out if the resource can be covered or partially covered by insurance to limit out of pocket expenses.
Please check out our Helpful Tips for Families of Preemies!
If you have additional resources you would like to share with us, or updates to the lists below, email us at info@preemiestoday.org.
Downloads (New!)
- Medicaid Teleconference: Includes Key Information Regarding the Financial Assistance Programs for Premature Infants by Heather Kane, March of Dimes Family Team Specialist and parent of two preemies with special needs. (MP3 format)
- Feeding Teleconference: Cheri Fraker SLP and author of Food Chaining. Ms. Fraker discusses her Pre-Chaining and Food Chaining Approaches to Feeding Issues and Feeding Disorders. (MP3 format)
- Parenting and Discipline: Understanding the Impact of Sensory Development with JoAnn Kennedy, OTL (MP3 format)
- Family Traditions with Cathy Rodriques, LCSW and Life Coach. How can building family traditions and routines reduce stress for you and your child? (MP3 format)
- How to Feed a NICU Baby by Stephanie Prescott, RN (PDF file) -- link coming soon!
Pediatric Medical Specialists
Specialty |
Practice Name and Contact Information |
|---|---|
Cardiology |
Pediatric Cardiology Associates Yorktown 50 Seymour I. Hepner, MD
|
Cardiology |
Children’s Cardiology Associates 8318 Arlington Blvd # 250 Patrick Callahan, MD Harish, Rudrah, DO James Telep, MD
|
Gastroenterology |
Loudoun Medical group 21785 Filigree Court, Suite 201 19455 Deerfield Avenue, Suite #205 |
Gastroenterology |
Gastroenterology Associates of Northern Virginia, Ltd. Fair Oaks Herndon 100 Elden Street Suite 12
Rockville 15005 Shady Grove Road Suite 120 Catherine Chao, MD |
| Lactation | Northern Virginia Lactation Consultants |
Neurosurgery |
INOVA Fairfax Hospital for Children’s Specialty Center (703) 970-2600 Gary Magram, MD |
Neurology |
INOVA Fairfax Hospital for Neurology 8505 Arlington Blvd., Suite 100 Virginia E. Elgin, MD
|
Neurology |
William M. McClintock, MD 8501 Arlington Blvd., Suite 200 |
Nutrition |
Sheree Hughes Virginia |
Nutrition |
Kelly Dorfman, M.S., L.N.D. Maryland |
Ophthalmology |
Northern Virginia Ophthalmology Associates FALLS CHURCH David J. Seidman, M.D. Forrest J. Ellis, M.D. Amy Jeffery, M.D.
|
Ophthalmology |
Stephen R. Glaser M.D. P.C. 15235 Shday Grove Road Suite 101 |
Ophthalmology and Retinalogy |
Edward Parelhoff, MD 2296 Opitz Blvd. |
Ophthalmology and Retinalogy |
The Retina Group of Washington 8505 Arlington Blvd, Suite 300 5454 Wisconsin Ave, Suite 1540 Locations also in Alexandria, Manassas, Bowie, Sterling, Rockville, Geenbelt, Clinton |
Ophthalmology and Retinalogy |
Toufic Melki , MD 1520 Shady Grove Road, Suite 302 1715 North George Mason Drive, Suite 103 |
Ophthalmology and Retinalogy |
Kaiser Ophthalmology (703) 922-1298 Joseph Territo, MD |
Perinatology |
Perinatal Associates of Northern Virginia 3020 Hammaker Court, Suite 501 Alfred Khoury, MD |
Perinatology |
Alessandro Guidini, MD Alexandria Hospital |
Perinatology |
Maternal Fetal Associates Sterling , VA Moustafa Hassan, MD |
Perinatology |
Thomas Pinckert, MD (301) 279-6060 |
Perinatology |
Moustafa M. Hassan, MD, AFCOG Director of Perinatology HolyCross Hospital |
Pulmonology |
Pediatric Lung Center 2730-A Prosperity Avenue 19450 Deerfield Avenue Sunil Kapoor , MD |
Therapy and Early Intervention
There are private, county, and state options for obtaining therapy for your preemie. Below is a list of therapy contacts.
Type of Program |
Name and Contact Information |
|---|---|
Infant Toddler Connection Virginia
|
The Infant Toddler Connection is funded by state and local governments and provides early intervention support and services to children ages 0-3. Children must have at least a 25% delay in one or more areas of development to qualify and may receive speech therapy, physical therapy, occupational therapy, or nutrition services as determined by their Individual Family Service Plan (IFSP) team. Parents pay for services on a sliding-fee scale. |
Infant Toddler Connection Virginia
|
Alexandria City Parent Infant Education (PIE) 517 N Street Asaph |
Infant Toddler Connection Virginia
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Arlington Parent Infant Education (PIE) Margaret Jones, Director Department of Human Services - PIE |
Infant Toddler Connection Virginia
|
Fairfax/Falls Church (703) 246-7121 Allan Phillips, Director 3750 Old Lee Highway |
Infant Toddler Connection Virginia
|
Rappahannock Area Communities Services Board Fredericksburg and Counties of Stafford, King George, Spotsylvania, Prince George, and Caroline Contact Person: Allison Standring – Coordinator 600 Jackson Street |
Infant Toddler Connection Virginia
|
Loudoun County Parent Infant Education (PIE) Contact person: Marilyn Hoexter 102 Heritage Way, Suite 305 |
Infant Toddler Connection Virginia
|
Prince William PIE (Includes Prince William County, Manassas City, and Manassas Park) Contact Person Linda Hutton 15941 Cardinal Drive 8007 Ashton Ave. |
Early Intervention District of Columbia |
Washington DC DC-Early Intervention Program Services |
Infant Toddler Program Maryland |
Maryland State Infant and Toddler Program Maryland Infant and Toddler program provides support and services from birth through age two. To find an Infant and Toddler program in your Maryland area call (800) 535-0182. |
Infant Toddler Program Maryland |
Montgomery County 51 Monroe Street |
Infant Toddler Program Maryland |
Prince George ’s County 9201 Basil Court, Suite 440 |
Child/Infant Development Program |
Some preemies leave the hospital and do not yet qualify for early intervention services. You can take your child to a local health care center in Fairfax County to get regular evaluations of your child’s development to determine if they qualify for services from the Infant Toddler Connection. Fairfax County Infant Development Program Falls Church (703) 534-8343 Herndon (703) 481-4242 Springfield (703) 569-1031 Mount Vernon District Office (703) 704-5203 Joseph Willard Health Center (703) 246-7100 |
Child Find |
Preschool Child Find is a part of the public school system and serves as a resource for preschool children and their families by providing services in the home or in various local elementary schools for children that qualify starting at age 3 through age 5 |
Child Find Virginia |
Virginia Alexandria (703) 824-6708 Arlington (703) 228-6042 Fairfax County Fairfax County Child Find is scheduled to move August 20, 2010 to the Parent Services Center 2334 Gallows Road Dunn Loring, VA 22027. Falls Church City (703) 248-5655 Prince William County (703) 791-8857 Manassas City (703) 257-1152 Manassas Park (703) 392-1317 |
Child Find Maryland |
Maryland Montgomery County (301) 929-2222 Prince Georges County (301) 808-2719 |
Child Find District of Columbia |
Washington DC (202) 727-8300 |
Private Therapy |
The Children’s Therapy Center Speech, occupational, and physical therapy 8348 Traford Lane, Suite 200 (703) 569-7500 100 Carpenter Drive, Suite 140 (703) 707-9022 |
Private Therapy |
Step by Step Pediatric Therapy Services 14527 Picket Oaks Road Provides home-based physical or occupational therapy |
Private Therapy |
Susan Falk-Muten and Associates Speech Therapy for children with language and feeding needs 11710 Bowman Green |
Private Therapy |
The Kids' Communication Center 4904 Wisconsin Ave. , |
Private Therapy |
Sense-Ational Playtime, LLC 12122 A Heritage Park Cr., |
Private Therapy |
Stepping Stones Therapy 4300 Montgomery Ave., Suite 303, |
| Private Therapy | Reston Speech and Language Center 626 K Grant Street Herndon, VA 20170 703-904-8334 www.restonspeech.com |
| Private Therapy | Progressive Pediatric Physical Therapy |
Medical Supplies
Resource |
Contact Information |
|---|---|
Apria Home Medical Provides oxygen and other related services |
5701 C General Washington Drive
Beltsville |
Johns Hopkins Home Care Group- Pediatrics at Home Provides full service to the pediatric patient; including respiratory, oxygen, tube feeding, infusion, durable medical equipment and therapy services (PT/OT/RT/SN). Serving the Greater Baltimore and surrounding areas in Maryland. |
www.hopkinsmedicine.org/homecare 410-288-8040 |
Roberts Home Medical Providers of durable medical and oxygen |
Northern Virginia 20465 Seneca Meadows Parkway |
Mid-Atlantic Home Medical |
Manassas , VA
Fredricksburg , VA Falls Church , VA 22041 |
The Orthotic Prosthetic Center – Serving Northern Virginia, Washington DC and Baltimore Providers of pediatric foot orthotics |
www.orthoticprostheticcenter.com/
8330 Professional Hill Drive 5810 Hubbard Drive |
Orthotics |
Many private pediatric therapy offices can cast and fit children for orthotics. Private therapy offices can be considerable less expensive than an orthotist. Be aware some orthotists may not see pediatric patients. |
Tummy Tunnels Clothing especially designed for children with g-tubes. |
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Hatchback Footware These are shoes made especially for foot orthotics |
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Baby Builders A unique exercise program created by a physical therapist for preemies |
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Therapy Shoppe Numerous therapy items recommended by your child’s therapists |
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Handwriting Without Tears Many school-aged preemies suffer from handwriting difficulties due to low-tone and poor fine motor coordination. This learning strategy was developed by an OT and is used in therapy centers and in many schools systems. It can greatly decrease handwriting frustration. |
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Signing Time! A sign language video series for hearing children. Sign language can help children communicate before they can even speak. Many preemies suffer from speech delays. Signing Time can help your child communicate at an earlier age and help them develop a larger vocabulary. Plus it is a lot of fun with great dance music for you and your child.
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Soothie Pacifier This pacifier is similar to the one given in the NICU. This site has other products related to feeding, positioning, and books related to prematurity. |
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The Tucker Sling This sling helps elevate your baby while they sleep and holds them in place in their crib. Parents that have had a baby with severe reflux have found this product very helpful. |
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| OxyPhone Help you child breathe easier with the nebulizer phone. |
State and National Resources
Resource |
Description |
|---|---|
Maryland
|
General Parenting Maryland Infant and Toddlers Program: Contact Information by County State Government Information: Education and Learning: Health Related Issues: |
Virginia Care Connection for Children (CCC) |
Care Connection is sponsored by the Virginia Department of Health. It provides state-wide centers to assist families with health insurance, access to special medical care, information on community resources, assistance in coordinating care and services, and family support. |
Family Involvement Project (888) 604-2677 |
The Family Involvement project is a program of the Arc of Virginia. FIP focuses on involving families to improve the early intervention program by creating and training parents to work on state review teams. |
Children with Special Health Care Needs Virginia Department of Health |
The Children with Special Health Care Needs (CSHCN) Program promotes the optimal health and development of Virginia's children with special health care needs by working in partnership with families, service providers, and communities.
|
March of Dimes |
Go to www.marchofdimes.com to find information regarding preganancy, birth defects, and prematurity. |
National Dissemination Center for Children with Disabilities (800) 695-0285 |
NICHY is funded by the federal office of Special Education Programs of the Department of Education and provides families with information and resources for toddlers and children with disabilities. |
ADHD Feingold Association of the United States |
Children diagnosed with ADHD, autism, PDD, and learning disabilities may benefit from the Feingold Program. The Feingold Program elminates all artificial dyes, artificial preservatives, aspartame, and certain salicylate from the diet and environment. |
Visual Impairments Childs Hope for Sight (804) 938-1624 |
CHS is a non-profit of parents, professionals, and other persons with the common objective to providing support and service to the parents of children with visual impairments in Virginia. |
Hydrocephalus Hydrocephalus Foundation, Inc. |
HYFI is a non-profit dedicated to providing support, education resources, and resources to patients and families affected by hydrocephalus. |
The State Children's Health Insurance Program (SCHIP) |
Every state in the nation, has a health insurance program for infants, children and teens. The insurance is available to children in working families. The states have different eligibility rules, but in most states, uninsured children 18 years old and younger, whose families earn up to $34,100 a year (for a family of four) are eligible. The State Children's Health Insurance program (SCHIP) can pay for doctors visits, immunizations, hospitalizations, and emergency room visits. |
Financial Assistance (New!)
Do you know of a financial assistance program that would be helpful to preemie parents? If so, e-mail us at info@preemiestoday.org and tell us about it.
Resources |
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Supplemental Security Benefits (SSI), Premature infants (37 weeks or less) who are low birth weight (less than 1200 grams or 2.8 lbs.), are considered temporarily disabled for the length of their hospitalization. The child (or parents) can receive up to $30.00 per month while the child is hospitalized. Speak to your NICU nurse or social worker for more information. You will need to submit an application at your local Social Security office. |
Medical Assistance (Medicaid) pays for medical expenses for those who are aged, blind, disabled, or who have dependent children. If your child qualifies for SSI benefits, he or she will also qualify for Medicaid for the length of the hospitalization. You must apply separately for Medicaid. Medicaid eligibility is based on SSI eligibility, not on income. If you have private health insurance and it covers 100% of your child’s hospitalization, you may not need to apply for Medicaid during your child’s NICU stay. Speak to your NICU social worker or your hospital financial assistance office. |
Institutional Medicaid pays for medical expenses for a child who has a hospitalization longer than 30 days regardless of birth weight or family income. You must apply for Institutional Medicaid prior to discharge. Speak to your NICU social worker or your hospital financial assistance office. |
Medicaid Waivers provide some services in the community to people who would otherwise be eligible for institutions, such as nursing facilities or Intermediate Care Facilities. These community services require an additional screening to be eligible. There are different types of Waivers. Here are a couple of examples from Virginia: a Technology (Tech) Waiver may provide private duty nursing, respite care, environmental modifications, and assistive technology. To be eligible your child must rely on technology in replace of a vital bodily function. For example, a gastric tube (g-tube) ventilator, or oxygen support. An Elderly Disabled Consumer Directed (EDCD) Waiver offers personal aide care, medication monitoring, consumer-directed care, and respite. To be eligible for this waiver your child must meet a level of functioning criteria or have a medical need. Go to http://www.dmas.virginia.gov/downloads/pdfs/ab-ltc_medicaid_waiver.pdf to learn more. |
The Health Insurance Premium Payment Program (HIPP) is a program that may be available to families with Medicaid. It may reimburse all or part of your employer’s sponsored health insurance premiums. To qualify at least one family member must have full Medicaid coverage and it must be cost-effective for Medicaid to pay your health insurance premiums and co-pays rather than pay for the medical services. |
Disabled Children's Relief Fund (DCRF), a non-profit 501(c)(3) organization, provides disabled children with assistance to obtain wheelchairs, orthopedic braces, walkers, lifts, hearing aids, eyeglasses, medical equipment, physical therapy, and surgery. |
Needy Meds is a 501(c)(3) non-profit with the mission of helping people who can't afford to pay for their medications
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The United Healthcare Children's Foundation is a 501(c)(3) non-profit charity dedicated to facilitating access to medical-related services that have the potential to significantly enhance either the clinical condition or the quality of life of the child and that are not fully covered by the available commercial health benefit plan. http://www.uhccf.org/apply.html |
The mission of the Aubrey Rose organization is to help families caring for children with life threatening illnesses with our focus being on the family unity. We strive to lift families from life's complexities during this difficult time by providing emotional and financial support. |
Jessica’s Hope Chest (JHC) offers assistance, including financial aid and counseling, to families of critically ill children under the age of 18, who have no other means to meet the extra burdens challenging them as a result of the child's illness. JHC helps to cover costs that are not covered by insurance policies or government aid programs, such as transportation to and from a distant hospital when a child needs specialized treatments; food and lodging during lengthy hospital stays; monthly aid to help cover household bills that are otherwise impossible to meet during periods of lost income due to a child's illness. http://www.4jhc.org/jhcapplicationspage.html |
The Kaitlin Marie Bell Foundation is a non-profit organization which supports the needs of medically and physically challenged children. We exist to increase lifestyle opportunities and quality of life for recipients by providing equipment and/or services that would not otherwise be affordable. |
RSV Prevention and Synagis Payment Assistance |
Abbott Patient Assistance Program |
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Store (New!) |
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2009 Lecture Series To learn more about the Preemies Today 2009 Lectures Series and purchase a DVD click here. Amazon Affiliates Page Books The Essential Guide for Parents of Premature Babies
Preemie Parents Companion
Diapers Clothing, NICU Journals, and Preemie Products Preemie Store Affliates Page Click here to visit The Preemie Store Childcare Sitter City will help you find child care in your area. The site provides photos and reviews. There is a membership fee. http://www.sittercity.com/
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Child Care and Respite Care
Resource |
Contact Information |
|---|---|
National Child Care Information Center |
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Student Sitters ( Northern Virginia babysitting service) |
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ARC Respite Locator (temporary respite care for children with special needs) |
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Mclean Bible Church Breakaway Respite Care Access Ministry (respite care for children over the age of 2 with special needs)
|
8925 Leesburg Pike
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Caring Communities (provides kits that will train adults and teens in the community to provide care for children with disabilities) |
1015 Glen Eagle Court
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Montgomery County/Prince George’s County Maryland Maple Shade |
(410) 742-7400 |
The Arc of Montgomery County |
Affiliate of the National ARC, it provides a variety of programs for young children with special needs. The Family, Infant, and Child Care Center provides child care for medical fragile infants and children with special needs from 6 weeks to 5 years of age. Montgomery Special Achievement Center provides special education for children with delays. Inclusion is encouraged. 11600 Nebel St. , |
The Arc of the District of Columbia |
Affiliate of the National ARC |
Resources in Spanish
Resource |
Information |
|---|---|
March of Dimes (in Spanish) |
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Informacion La Prevencion del RSV RSV Protection (in Spanish) |
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Hitos en el Desarrollo (Zero to Three Developmental Milestones) |
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Hispanic Committee of Virginia 5827 Columbia Pike Suite 200 Falls Church VA 22041 |
www.Hispaniccommiteeofvirginia.com (703) 671-5666
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National Council of La Raza |
(202) 785-1670 |
Washington DC Metropolitan Hospitals
Hospital |
NICU Services |
Contact Information |
|---|---|---|
Children's National Medical Center |
Level IIIC NICU, Not a delivering hospital, comprehensive pediatric and genetic specialists, private rooms with a 54 bed unit |
111 Michigan Ave., NW , Washington, DC , (202)884-5000, www.dcchildrens.com |
| George Washington University Hospital | Level IV NICU; 12 bed unit | |
Georgetown Hospital |
Level III NICU, 44 beds |
3800 Reservoir Road, NW , Washington, DC 20007 |
Holy Cross Hospital |
Level III NICU with a 46 bed unit |
1500 Forest Glen Rd. , Silver Spring, MD , (301)754-8800. |
| Howard University Hospital | Level III NICU; 9 bed unit | 2041 Georgia Ave., NW |
INOVA Alexandria Hospital |
Level III NICU |
4320 Seminary Road Alexandria, VA 22304 , (703) 504-3000, |
INOVA Fairfax Hospital |
Level III NICU; 75 bed unit; fifth largest perinatology department and antenatal, neonatal mortality rates are among the lowest in the nation. |
3300 Gallows Road Falls Church, VA 22042 , |
INOVA Fair Oaks Hospital |
Level II NICU, 19 private bed rooms, 24-hour visitation for family members, and free valet parking. |
3600 Joseph Siewick Drive Fairfax, VA 22033 , (703) 391-3600, |
INOVA Loudoun Hospital |
Level II NICU, 7 bed unit |
44045 Riverside Pkwy. , Leesburg, VA , |
Potomac Hospital |
Level III NICU, 6 beds in Level III and 8 beds in Level II |
2300 Opitz Blvd. , Woodbridge, VA 22191 |
Prince William Hospital |
Level III NICU,8 bed unit |
8700 Sudley Road , Manassas, VA 20110 , (703) 369-8270 |
Reston Hospital Center |
Level II NICU, 12 bed unit |
1850 Town Center Parkway , Reston, VA 20190 , (703) 289-9000 |
Shady Grove Adventist Hospital |
Level III-B NICU |
9901 Medical Center Dr. Rockville, MD |
Virginia Hospital Center |
Level III-A NICU; 15 bed unit with all private rooms. |
1701 N. George Mason Drive |
| Washington Hospital Center | Level III NICU; 36 bed unit | 110 Irving St., NW |
*The American Academy of Pediatrics Policy Statement on Levels of Neonatal Care http://aappolicy.aappublications.org/cgi/content/full/pediatrics;114/5/1341
Baltimore-Based Hospitals
Hospital |
NICU Services |
Contact Information |
|---|---|---|
| Johns Hopkins Children’s Center | Level III NICU; 45 bed unit |
600 North Wolfe Street
|
Greater Baltimore Medical Center (GBMC) |
Level III NICU; 30 bed unit; acoustic shielding; family sleep rooms are located within the unit. |
6701 North Charles Street |
Sinai Hospital of Baltimore |
Level III+; 20 bed unit |
2401 W. Belvedere Ave. |
Mt. Washington Pediatric Hospital |
Mt. Washington Pediatric Hospital provides inpatient, outpatient and day programs for infants and children with rehabilitation and/or complex medical needs. |
1708 West Rogers Avenue |
University of Maryland Medical Center |
Level III; 40 bed unit |
22 S. Greene Street |
Saint Agnes Hospital |
Level III; family over-night room, and sibling visitation |
900 Caton Ave. |
*The American Academy of Pediatrics Policy Statement on Levels of Neonatal Care
http://aappolicy.aappublications.org/cgi/content/full/pediatrics;114/5/1341
