Alexandra's House
638 W. 39th Terrace
Kansas City MO 64111

Web and Phone Contact
Telephone (816) 8982539 8982539
Mission Statement
To compassionately and lovingly serve some of the most vulnerable of humanity among us, terminally ill unborn-newborn babies, diagnosed before birth with fatal disorders,  and any infant in the community dying from any cause; upholding the family, bringing meaning to their suffering, being merciful to anyone in need of our care, and helping to build a Culture of Love.
Leadership
CEO/Executive Director Ms. Patti J Lewis
Board Chair Dr. William Schwartz
Board Chair Company Affiliation Midwest Perinatology
History and Background
Year of Incorporation 1997
Financial Summary
Revenue Expense Area Graph

Comparing revenue to expenses shows how the organizations finances fluctuate over time.

Source: IRS Form 990

 Breakdown
Net Gain/Loss:    in 
Note: When component data are not available, the graph displays the total Revenue and/or Expense values.
Statements
Mission Statement To compassionately and lovingly serve some of the most vulnerable of humanity among us, terminally ill unborn-newborn babies, diagnosed before birth with fatal disorders,  and any infant in the community dying from any cause; upholding the family, bringing meaning to their suffering, being merciful to anyone in need of our care, and helping to build a Culture of Love.
Background Statement Baby Alexandra was born without warning into her family and into this world on December 12, 1994. Weighing but three pounds, with 12 fingers and 12 toes, and suffering a lethal genetic disorder, her life spanned 45 arduous days; 28 in the hospital; the rest at home. At every moment of this journey and particularly in the last three days, as Alexandra was dying, she was held close to her family’s aching hearts. Over and above the excruciating pain associated with her life and then her death, they felt complete isolation, as Alex came home with minimal medical and ancillary support. Those days and especially nights, caring for Alexandra were long and frightening. At that time, medicine, while being hugely successful in its mission of healing, was maybe not as well prepared when "nothing more can be done" to help families cope as their unborn/newborn babies would die and whose time on earth would be difficult. Alexandra’s House was born in 1996 and officially founded in 1997 when Alexandra’s aunt Patti witnessed the great gaping hole in medical and social service support for families and their terminally ill babies. She chose to soften this blow for others by founding Alexandra’s House as a charitable perinatal support system to fill in many of those gaps. Parents no longer need to do this alone.  These nearly 18 years later, many hospitals now have formal pediatric palliative care programs to help support these special families and their babies. There is still a need to intimately address the special personal needs of the parents and that is done best by their peers; others who have walked this path before. Those are the essential services Alexandra's House continues to offer. All Alexandra's House does is offered for free. These  supportive services begin at diagnosis, go through pregnancy, labor, delivery, the birth/death of the baby and bereavement support is provided for at least three years. Housing is available for families whose babies survive after hospitalization and whose parents wish for additional support at the House. Staffing of Alexandra's House is  by dedicated volunteers from various professional backgrounds. Providing irreplaceable service are parents served who remain connected to Alexandra's House long after their baby's death. They volunteer to serve as mentors and advocates to new parents.The logo for Alexandra's House is her six-fingered handprint.
Impact Statement
A few of our accomplishments include:
 
  1. A new program, Project Fun, specifically designed for siblings who  have experienced the death of a baby in their family, to aid in their healing.
  2. Staff enrolled in a series of educational programs to be better equipped to meet needs of those served.
  3. Continue to speak locally and nationally about the unique services Alexandra's House offers that help to meet real needs of an under-served group, the broken-hearted, whose babies have died or likely will die.
 
 
Our goals include:
 
  1. Continuing staff education in order to better serve those who enter into our care, particularly studying methods of helping with the healing of their emotional and spiritual wounds. One of these courses spans three years.
  2. Cautiously enter the world of social media to both highlight the special services Alexandra's House offers as well as reach more of those in need who are unaware its services exist.
  3. Lay the groundwork, which may be slow, to be able to bring abandoned babies into our residential care.
 

Goals are to expand and improve all above.
 
  1. Train volunteer forces to serve in a variety of capacities to enhance our overall services.
  2. Use our new video and other technology to increase awareness of our services to better reach those on need and those who might serve.
  3. Actively recruit women to commit to a 12-month period of service who will live communally at Alexandra's House.
  4. Strengthen relationships with other agencies to improve services.
  5. Develop better web based tools to connect to broader audience.
  6. Provide outreach support to parents and siblings who lost a baby or sibling decades ago and were never able to adequately express their sorrow and to help them find resolution.
 
Needs Statement
  1. Reach women who might feel called to serve Alexandra's House with their lives, to live in community and serve this mission. 
  2. Volunteers who would agree to be "on call" through the night and training for these volunteers. 
  3. Professional expertise and would ask for IN-KIND gifts of: Business evaluation and growth Public relations, Marketing Web expansion.
  4. Community care specialist to advise licensing options for a residential care facility for infants.
  5. Outcomes measurement and tracking consultancy - the challenge is evaluating such subjective responses and no tools for our particular work currently exist.
Service Categories
Health Care NEC
Support NEC
Hospice
Areas of Service
MO
KS
MO - Jackson County
MO - Clay County
MO - Platte County
KS - Wyandotte County
KS - Johnson County
MO - Eastern Jackson Co
MO - Jackson County Urban Core
AK
AR
CA
CO
FL
GA
IL
IN
IA
MA
NE
NY
OH
SC
TX
WI
CEO/Executive Director/Board Chair Statement

What a challenge it was in 1997 to move the Perinatal Hospice program of Alexandra's House from being simply a new and unique idea to actually providing beneficial activities for parents with pregnancies that will end with their babies’ deaths from natural causes; i.e. lethal genetic and chromosomal abnormalities. Many thought it simply a noble idea but not really necessary. This idea was unheard-of. Many thought it futile, an unnecessary expenditure of resources – so much thrown away on those who could not hope to benefit. In short, a waste.  In spite of its naysayers, Alexandra's House received its first referral in 1999 and referrals have been non-stop since.

 

We can now look back these many years later upon the countless families and babies both regionally and across the country that have received our services since and who report very positive experiences.

 

Now, instead of opposition, we witness rapidly multiplying similar programs springing up around the country. Today, most hospitals locally and nationally have formally trained pediatric palliative care teams to help the very smallest babies of these families, the yet unborn and frail newly born.

 

One of Alexandra's House mothers, a prominent historian, reports: “All of us who have been touched by Alexandra’s House know that wanting care and comfort for our seriously ill babies is not a waste. Here, twenty years later, we are connected by a deep bond indeed, united by the loss of our little ones, and gathered together as a family supporting one another in grief and in healing”.

 

What began on December 12, 1994, with the birth of a tiny baby named Alexandra into her family, who drew such immense love that it propelled her aunt into this service to the most vulnerable portion of humanity, terminally ill babies, has come a long way indeed.

 

Programs
Description Provides spiritual, grief, and practical support to families who are pregnant and find, by prenatal testing, that their unborn babies have life-limiting disorders. We support them during medical visits, help them develop thoughtful but practical birth plans, guide them in preparing for both the birth and death of their babies, go with them to labor and delivery, gathering mementos, organizing rituals for memory – i.e. baptism, vigils, funerals, and long-term bereavement care. If a baby survives to be dismissed from the hospital, we are equipped to support the family at our house, through the baby's remaining life and their death. Alexandra's House’s objective is to fill in the gap, therefore, we offer supportive, not professional nursing care. If there is a need for advanced nursing assessment, those services can be contracted through existing hospice/nursing agencies and carried out while the baby and family are in residence. 
Program Budget $55,000.00
Category Health Care, General/Other Hospice Care
Population Served Infants to Preschool (under age 5), Adults, Families
Short-Term Success
  1. Clients report feeling supported & encouraged.
  2. Demonstrate an understanding of medicine in their decisions to carry their baby to term.
  3. Babies are loved and seen as members of family.
  4. Clients have good memories of their experience to propel healthy mourning.
  5. Parents hold their dying child, and remaining with them in their journey.
Long-Term Success Healthy women and men build healthy families.
Program Success Monitored By We meet with our couples often or speak with them on the telephone. By verbal and written report, they affirm the involvement of Alexandra's House has had a positive impact on their experience and in their recovery. We ask families to evaluate what helped and what was needed/not fulfilled and how services can be improved, after every delivery. Annually we email surveys to couples served. Currently we have retained a consultant to help us develop an electronic reporting and tracking system. Finally outcome measurements will but a part of this program.
Examples of Program Success It is reported that 80% of couples who experience the death of child will divorce. Through our careful preparation, our families report that their marriages are strengthened by this experience. One mother said her marriage was "80% better" and another recently said she and her husband are "closer now than on their wedding day." No families have divorced and all report their family life is strengthened. Many have gone on to have healthy babies; others, sadly, have lost a second and third baby. A referring physician stated; "You (Alexandra's House) make our jobs so much easier;" "This (perinatal hospice) is just the right thing to do;" "This is the life your child is going to have. Experience it, don't turn away; turn to Alexandra's House."
Description
Consists of six programs:
  1. Individual or group retreats which provide grief support to individuals, families or family groups.
  2. Peer support groups - Second Saturdays for anticipated losses:  Fourth Saturdays for unanticipated loss.  
  3. Family-family volunteer mentoring. 
  4. Grandparent support group. 
  5. Father's support and mentoring group. 
  6. New care for the caregiver.
Program Budget $35,000.00
Category Mental Health, Substance Abuse Programs, General/other Grief Counseling
Population Served Adults, Families, Children and Youth (0 - 19 years)
Short-Term Success
  1. Clients report feeling supported 
  2. Families engage in healthy mourning 
  3. Couples support each other 
  4. Parents choose to mentor new families
Long-Term Success Healthy women and men build healthy families.
Program Success Monitored By We meet with our couples often and/ or speak with them on the telephone. By verbal and written report, they affirm the involvement of Alexandra's House has had a positive impact on their experience and in their recovery. We have mailed surveys but need to do this on a more regular basis and need to engage a consultant to assure the information collected is of value.
Examples of Program Success Many of our families meet quarterly and also get together for a yearly retreat. New parents finding themselves in the same situation are also invited to attend these meetings. We recognize we are not alone and others have been through the same experience and same trials. Their experiences, support and understanding are a tremendous help and comfort. We are not alone in this journey. Alexandra's House helps us form a birth plan so our doctor, nurses, and staff know exactly the procedures we want followed at the birth/death of our child. We have also discussed our plans with our immediate families and have made arrangements for the possible funeral and burial. We are inspired to help others after we have finished going through the healing process. I didn't want my child to die but I'm grateful because I met Patti and the people associated with Alexandra's House. I'm a stronger person and I have hope for the future.
Description Make sure every baby is buried in a special outfit, wrapped in a special blanket and buried with a cuddly toy.
Program Budget $3,300.00
Category Health Care, General/Other Patient & Family Support
Population Served Children and Youth (0 - 19 years), ,
Short-Term Success Provide support and bring meaning to the suffering of families who have lost newborn babies.
Long-Term Success Simply brings dignity to a fragile life and healing to their family's suffering.
Program Success Monitored By We have provided garments for well over 300 families who have been directly served by Alexandra's House and more recently, sent 50 more outfits to a hospital who requested some, as well. Also we should note growth through ongoing referrals from the medical and general community.
Examples of Program Success Often parents report that because they thought the would be planning a nursery rather than a funeral for their unborn baby, they felt too paralyzed by their grief to go out shopping for a burial outfit. That Alexandra's House took that task upon themselves and provided their baby with a beautiful outfit and snuggly blanket and toy, it aided so much in diminishing of their pain and the positive memory helped them in resolving their grief.
CEO Comments Alexandra's House provides active management versus benign neglect for families pregnant with terminally ill babies who will die at or soon after birth. In the early days of our founding, most of our referrals were from individuals, crisis pregnancy centers, and churches. Now over 90% of referrals come from the medical community. Our relationships with area hospitals, clinics, and private practitioners are strong. Invitations have come from cities around the United States and now New Zealand seeking our leadership team as speakers at grand rounds and other conferences. This is stimulating interest in other communities to duplicate our program with Alexandra's House's assistance. Many have come to Alexandra's House to serve preceptor ships, both in and outside our city. Our website has generated consults from around the country and Alexandra's House has been invited to travel to these cities to attend the births of their terminally ill babies. This "going out" is a new area of service for us. Articles about our work have also been published in the national journal, "Health Progress", ACOG website, Focus on the Family Magazine, and others. We are presently trying to develop a perinatal grief scale or measurement tool regarding healing after an expected loss through the OB/GYN Department of UMKC School of Medicine-project led by Dr. Jeff Wall. This may take up to a year to have a questionnaire that would pass an IRB (Institutional Review Board). The (IRBs) reviews and approves all relevant medical research tools/projects. Therefore, no definable outcomes will be available for a while. Our services are simply too new and too few places are providing the same services. This is very much a grassroots movement.
Executive Director/CEO
Executive Director Ms. Patti J Lewis
Term Start Apr 1997
Experience Ms. Lewis is a registered nurse with nearly 30 years experience in the field of cardiovascular disease management. She worked in a variety of settings including acute care, cardiac rehabilitation and in the area of primary and secondary preventive cardiology. At one point in her career, she was in partnership in a private medical-business enterprise. The life and death of her niece Alexandra in 1994, however, changed the course of her life, causing her to found Alexandra's House and to dedicate the rest of her life to serving families and their dying babies. Founding, in 1997, this yet unheard of type of perinatal-family support service organization made her a pioneer of sorts, though she was unaware of that fact early on, until individuals and organizations across America and in many other countries sought her advice as to how they could replicate these services. She also received and still receives consults from families in the US and some in the EU who are looking for help during their pregnancies with suspected grave outcomes. Her experience in working closely with these families and listening to their very special needs and desires has helped impact public policy through her writing an Advanced Directive for unborn babies.
Co-CEO/Executive Director
Term Start
Compensation Last Year
Senior Staff
Title Executive Director
Experience/Biography Ms. Lewis is a registered nurse with nearly 30 years experience in the field of cardiovascular disease management. She worked in a variety of settings including acute care, cardiac rehabilitation and in the area of primary and secondary preventive cardiology. At one point in her career, she was in partnership in a private medical-business enterprise. The life and death of her niece Alexandra changed the course of her life, causing her to found Alexandra's House and to dedicate the rest of her life to serving families and their dying babies in these grave situations.
Title Medical Director
Experience/Biography In January, 2008 Jeffrey Wall, MD accepted the role of Medical Director for Alexandra’s House. A former colleague and close friend of the late Dr. Eugene Pearce, Dr. Wall was personally chosen by Dr. Pearce to succeed him in this position for the organization and mission he so dearly loved. 1989 graduated from UMKC and completed a residency in Obstetrics & Gynecology at St. Francis Hospital, Evanston, IL in 1993 After spending time in the US Navy, he returned to Kansas City where he was in private practice as the Chief of Obstetrics & Gynecology for Kaiser Permanente in KC. In 2000, he joined the faculty of UMKC and is currently the director of Ambulatory Care for the Women's Health & wellness Center at Truman Medical Center, Hospital Hill. In 1993, Dr. Wall and his wife lost their second child Connor, at birth, to a malignant teratoma. This life-changing event, while tragic, strengthened their marriage and their commitment to life and their challenges. Dr. Wall graduated from the University of Missouri-Kansas City in 1989 and completed a residency in Obstetrics and Gynecology at St. Francis Hospital in Evanston, Illinois in 1993. After spending time in the US Navy, he returned to Kansas City where he was in private practice as the Chief of Obstetrics and Gynecology for Kaiser Permanente in Kansas City. In 2000, he joined the faculty of UMKC and is currently the Director of Ambulatory Care for the Women's Health and Wellness Center at Truman Medical Center, Hospital Hill. In 1993 Dr. Wall and his wife lost their second child Connor, at birth, to a malignant teratoma. At the time there were very few resources for families facing the loss of a child in pregnancy or at birth. This life-changing event, while tragic, strengthened their marriage and their commitment to life and its challenges. They sleep soundly at night, knowing that they gave Connor every opportunity for life. Even though his life was brief, his impact was profound.
Title AA
Experience/Biography Kathy volunteered at Alexandra's House appoximately three years helping Patti with financial recording and tracking. She joined the staff as a part time employee when a grant was awarded to hire someone. Her past experince is as follows: Admin Financial Specialist, KU School of Nursing July 2005-February 2007 Secretary, Ben Tarbe Used Brick, Inc. 1985 to Present (part time) Volunteer 2001-2005, St. Agnes Church, Roeland Park, KS Admin Asst Volunteer, 2002-2003, Union Station Rock the Clock Gala 2003 Volunteer, Notre Dame de Sion Elementary & High School, KCMO 1990-2003 Classroom Teacher, Guardian Angels School, KCMO 1981-1982 Classroom Teacher, Easton Grade School, Easton, KS BA Elem Ed, 1979, Wichita State University, Wichita, KS Ward Secretary, Veterans Hospital, Wichita, KS 1977-1978 Unit Secretary, Veterans Hospital, Leavenworth, KS 1976-1977 Payroll Clerk, Finance & Acctg, Office of US Government, Ft. Leavenworth, KS 1974-1976
Title Adminstration
Staff
Paid Full-Time Staff 3
Paid Part-Time Staff 0
Volunteers 25
Paid Contractors 0
Retention Rate 100%
Formal Evaluations
Senior Management Formal Evaluation Yes
Senior Management Formal Evaluation Frequency Quarterly
Plans & Policies
Organization Has a Fundraising Plan No
Organization Has a Strategic Plan Under Development
Management Succession Plan No
Organization Policy and Procedures Under Development
Nondiscrimination Policy No
Whistleblower Policy No
Collaborations
St. Luke’s Perinatal Center, Midwest Perinatal Associates, Truman Medical Center, Children’s Mercy Hospital, crisis pregnancy centers, faith communities-multiple denominations, Ronald McDonald House, Soroptimist, Carousel Program, Eagle Scouts, Kappa, Kappa Gamma Alumni Association.
Awards
Award/RecognitionOrganizationYear
Excel AwardChristian Community Foundation of Kansas City2001
Legion of HonorChaplin of the four Chaplins2002
Modern Day DiscipleGrace in Action2004
Hero in HealthcareIngram's Magaziine2007
Buck O'Neil Legacy AwardKansas City Royals2008
First Recipient Dan Quisenberry Humanitarian AwardKansas City Royals2009
Outstanding Service to WomenSoroptimists International2009
Government Licenses
Is your organization licensed by the government? No
Board Chair
Board Chair Dr. William Schwartz
Company Affiliation Midwest Perinatology
Term Dec 2011 to Dec 2016
Email wschwartz@perinatalmd.com
Board Members
NameAffiliation
Ms. Marie Johnson Mid-America Cardiology Associates, KU Hospital
Ms. Patti Lewis Founder - Alexandra's House
Dr. William Schwartz Perinatologist, Midwest Perinatal Associates
Dr. Jeffrey Wall Cerner Corp and Women's Care Truman Med Center
Board Demographics - Ethnicity
African American/Black 0
Asian American/Pacific Islander 0
Caucasian 4
Hispanic/Latino 0
Native American/American Indian 0
Other 0
Board Demographics - Gender
Male 2
Female 2
Unspecified 0
Governance
Board Term Lengths 3
Board Term Limits 0
Board Meeting Attendance % 100%
Written Board Selection Criteria? Under Development
Written Conflict of Interest Policy? Under Development
Percentage Making Monetary Contributions 80%
Percentage Making In-Kind Contributions 100%
Constituency Includes Client Representation Yes
Number of Full Board Meetings Annually 1
Standing Committees
Advisory Board Members
NameAffiliation
Monsignor William J Blacet Our Lady of Good Counsel Parish
Mr. John E Erickson Community Volunteer
Dr. Frederick K Hall D.O.Children's Mercy Medical Center
Mr. John Hart Samsung
Ms. Michelle Salzman R.N.,LSCSWIndividual, Couple, and Family Counseling
Dr. Marycarroll Sullivan RN, MTS, JDDirector of Ethics and Education Covenant Health Systems, MA
Financials
Fiscal Year Start Jan 01, 2016
Fiscal Year End Dec 31, 2016
Projected Revenue $110,000
Projected Expenses $130,000
IRS Letter of Exemption
Foundation Comments
  • FY 2015, 2014, 2013: Financial data reported using IRS Form 990.  
  • Foundation/corporate revenue line item may include contributions from individuals.
Detailed Financials
Expense Allocation
Fiscal Year201520142013
Program Expense$103,613$117,159$116,928
Administration Expense$32,328$30,946$34,850
Fundraising Expense$21,244$27,347$2,932
Payments to Affiliates----$0
Total Revenue/Total Expenses1.060.851.25
Program Expense/Total Expenses66%67%76%
Fundraising Expense/Contributed Revenue13%18%2%
Assets and Liabilities
Fiscal Year201520142013
Total Assets$644,943$634,573$661,224
Current Assets$279,249$262,535$285,946
Long-Term Liabilities$0$0$0
Current Liabilities$1,860$1,906$1,250
Total Net Assets$643,083$632,667$659,974
Short-Term Solvency
Fiscal Year201520142013
Current Ratio: Current Assets/Current Liabilities150.13137.74228.76
Long-Term Solvency
Fiscal Year201520142013
Long-Term Liabilities/Total Assets0%0%0%
Top Funding Sources
Fiscal Year201520142013
Top Funding Source & Dollar Amount -- --Friends $36,000
Second Highest Funding Source & Dollar Amount -- --Foundation $20,000
Third Highest Funding Source & Dollar Amount -- --Individual Donor $7,200
Capital Campaign
Currently in a Capital Campaign? No
Capital Campaign Anticipated in Next 5 Years No
Organization Comments Alexandra's House was initially subsidized, from 1997, primarily by the personal income of its founder. In 2002 a generous local donor, who simply believed in this mission, purchased the property Alexandra's House currently occupies, at a cost of $189,000. He added immediate improvements at a cost of another $4,000. Since then central air has been installed throughout and a new gathering space was added also. Every year Alexandra's House sees growth in its financial support. As a year-end gift in 2006, the donor and his wife paid off the mortgage loan balance and signed the deed over to Alexandra's House. Another local donor and his family contributed funds to allow Alexandra's House to hire an administrator. Additionally, several other cities are planning to duplicate our mission, seeing Alexandra's House as the experts in this field. Thus, Alexandra's House is proven to be both sustainable and reproducible.
Organization Name Alexandra's House
Address 638 W. 39th Terrace
Kansas City, MO 64111
Primary Phone (816) 89825398982539
Contact Email care@alexandrashouse.com
CEO/Executive Director Ms. Patti J Lewis
Board Chair Dr. William Schwartz
Board Chair Company Affiliation Midwest Perinatology
Year of Incorporation 1997