“I Can do All Things Through Christ Who Gives Me Strength” Every time Hannah Faith’s parents see a butter-fly, they think of her, and are reminded that she is running and dancing with Jesus.

Kellie and Mike Carr were expecting their sec-ond child when the news that she might have a genetic condition called Trisomy 13 changed everything. Their resilience, faith, and the pray-ers of others strengthened them as they carried Hannah to term and in the months between her birth and death. She is remembered as “a beautiful, strong, and precious blessing from God who enjoyed hearing mommy read her stories and sing her songs, and who loved being held by daddy and her big sister.” We are sharing Hannah’s story during Trisomy Awareness Month, as we remember all our precious BNA babies with Trisomy diagnoses.

Inside this issue:

BNA Publishes Catholic Ethics Document 2

Medical Professionals That Make A Difference 3

What Parents Say About BNA 4

very apologetic to share this news and offered an amniocentesis to confirm the diag-nosis, but we declined due to the risk of mis-carriage. We put our faith in God because we knew Hannah’s life was given to us as a bless-ing, and we were going to do everything we could to provide what she needed to survive. How did you hear about BNA and what was your first contact with BNA like? A friend of ours had been supported by BNA as they carried their baby with a prenatal diagnosis to term, and she suggested we reach out to them. Our first phone contact was the week before Hannah was born. It was extremely helpful as a lot of valuable infor-mation was shared! I felt encouraged because I was able to talk with someone who was not only familiar with prenatal diagnoses, but who was knowledgeable regarding T13 and would be walking beside us during our jour-ney! I felt hope because she knew other T13 babies who were born and who have lived to their first birthday and longer. BNA had helped other families and precious babies, and they could guide us on how to communi-cate with the doctors so we could be able to...

Spring of 2020

Kellie has chosen this month to raise awareness regarding Trisomy diagnoses and to raise funds for BNA by organizing an online bake sale. She is selling her beautiful cakes and cookies to family, friends, and other supporters.

When did you first hear that Hannah might have Trisomy 13?

My doctor called me at home and told me that my bloodwork came back that it was likely that Hannah had T13. He went on to say that it is a chromosomal condition, and he shared infor-mation about some of the health issues babies with T13 might have including cleft lip, brain abnormalities, and heart defects. He said that most babies with T13 don’t live very long once they are born, and that some pass in the moth-er’s womb before the third trimester. He was

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...best advocate for what we wanted for Hannah’s birth! What did BNA provide for you? They provided comfort, hope, resources and guidance. They quickly arranged an appointment for me with an OB who delivered at a hospital with a larger NICU so that we would have the care we needed for Hannah. They helped me write a birth plan on short notice and provided a peer who was so comforting and right by my side during Hannah’s delivery! We had not met before, but there she was giving me strength & peace. BNA connected me with a mother whose baby had T18 and she has become a special friend to me! It’s been very comforting to talk with someone who has walked in a journey similar to ours! They also connected us with a NILMDTS photographer. She was able to capture photos of Hannah on the day she was born. BNA mentors gave us a personal-ized quilt with her name on it & a special bracelet for her to wear! They connected us with an amazing neonatologist who specializes in the care of babies with T13. He was so helpful in diagnosing a health complication Hannah experienced and

...All Things Through Christ (continued)

told us what testing we needed to ask for. We are forever grateful for him! We feel that God worked through him and others helping us have more time with Hannah that we would not have had otherwise. What was one unexpected experience of grace that you had around Hannah? That she was born breathing on her own! The doctors did not expect her to be born breathing. God breathed life into her, and one of my best memories of Hannah was hearing her cry at birth. There were also many experiences of grace around the day Hannah went to be with Jesus. She smiled some of her most beautiful smiles that day. And right before her heart stopped, Hannah lifted up her arms and we believe that she was raising her arms to Jesus! This gave us peace even in the midst of our broken hearts. God gave us these precious moments with her as a gift and we know we will see her again one day. What would you say to parents experiencing a prenatal diagnosis?

I would tell them to stay strong in their beliefs and carry to term; even when doctors continue to ask several times if you want to terminate. Advocate for your baby inside and outside of the womb because some things can’t always be explained by medicine or science. And reach

out and contact BNA! In a time of uncer-tainty, BNA can help guide you, provide resources, help you create a birth plan, and provide encouragement!

What would you say to medical providers from the perspective of your experience as the mom of a baby with a life-limiting prena-tal diagnosis?

I would tell them that Hannah’s life was special, and that her life mattered. I would tell them that T13 and 18 can be compatible with life and that some babies with T13 and T18 have better outcomes and bring a lot of joy to their families! Help families under-stand the varying degree of outcomes for babies with trisomy diagnoses. Don’t paint a grim picture that all babies with T13 are going to pass before birth, or at birth or before their first birthday. And please allow fetal heart monitoring during delivery.

What did Hannah’s life teach you?

Her life taught us that God’s strength and lots of prayers will carry you through. That our faith and the faith of others can be made stronger through seeing all of the prayers that God answered around Han-nah’s life. She also taught me to fight hard and to keep advocating. Philippians 4:13 has always been special to me: “For I can do all things through Christ who gives me strength.” Hannah fought hard, and she taught me how powerful God’s strength is!

BNA Publishes Catholic Ethics Document in 2019 In 2019, BNA staff engaged in a series of consults with ethicists at the National Catholic Bioethics Center (NCBC) and with two neona-tologists to clarify Catholic teaching regarding the care of infants born who had been prenatally diagnosed with life-limiting prenatal diagnoses. The intention was not only to publish ethical guidance for parents carrying to term, but also to provide parents with a re-source they could use in advocating for the care of their babies. BNA published the ethics document in the summer of 2019, then pub-lished an article in the NCBC periodical (Ethics and Medics) and a chapter in an NCBC reference book featuring the stories of parents who had used the document in their birth planning and baby advocacy. Both were published in January of this year. Dr. Ted Furton, NCBC Director of Publications, offered the following quote regarding BNA’s work on this project:

"Be Not Afraid's statement on the ‘Ethical Care of Infants with a Life-Limiting Diagnosis’ represents groundbreaking work in a neglected area of infant care. The organization is a wonderful resource for parents facing challenging diagnoses for their unborn children…Their insights should be available to the widest possible audience.” Visit the BNA website to read the Ethics Document and/or the Ethics and Medics article: https://www.benotafraid.net/Life-Affirming-Resources

Page 3 Spring of 2020

Medical Professionals That Make a Difference: Meet Lanise Shortell In the immediacy of a prenatal diagnosis, when carrying to term, and in the hours, days, weeks, months or years that parents have with a child who has been prenatally diagnosed, interactions with medical providers can be impactful. Most parents carrying to term encounter medical insensitivity, and those with living children often find disability bias to be a major hurdle in securing basic care and extraordinary treatment for their babies.

In an effort to spotlight medical providers who offer parents sensitive care and who treat babies with a life-limiting diagnosis like other new-borns worthy of individualized care, BNA has created this new column in the BNA quarterly newsletter.

We are pleased, in this first installment, to feature an interview with Lanise Shortell, RN, Pediatric Clinical Care Nurse Specialist at The Children’s Program of Hospice Atlanta. Lanise’s involvement with the parents of children with Trisomy 13 and 18 often begins prenatally or at discharge when a surviving infant is sent home with hospice care. Lanise has made a difference for many families by valuing the lives of each of the babies in her care, and by providing advoca-cy for medical care that addresses the needs of individual children.

Tell us about your experience caring for babies diagnosed with T13 and T18.

My experience in caring for T13 and T18 babies over the past 12 years has been rich, insightful, and life-affirming. The children I have been honored to care for have taught me that each baby has a story to share and it is our responsi-bility to allow that to happen. Interestingly, we have graduated 5 T13 babies, from our hospice program, and 4 T18 babies.

Is your response different from the usual re-sponse of the medical community to these in-fants?

Yes. When I meet with families expecting a baby with T13 or T18, my conversation looks much different than the conversations they have experienced with other clinicians. Initially, I connect families with domestic and interna-tional resources around caring for this unique population of infants. I feel it is vital to ensure families affected by T13 and T18 do not feel alone and isolated. Families connecting with other families encourages parents to en-sure their children with life-limiting illnesses are cared for and honored, and that treatments are individualized, as they should be. I feel sad

when I encounter families that have not been provided appropriate options and are firmly ushered down a path that does not take their individual child in account. I feel sad when a baby is seen as a diagnosis versus a baby that is living a life worthy of honor. T13 and T18 are diagnoses that are coined in current medical literature as “incompatible with life.” I find this term traumatic to hear.

Parents are often traumatized by the medical community’s response to a baby with a diagno-sis of T13 or T18. What are your observations about the language used when talking about these diagnoses with parents?

When physicians and nurses use words such as “incompatible with life,” we need to grasp the potential of how our words can reflect a sense of unworthiness of a human life. The choice of words we use often leaves scars on the hearts of bereaved parents. When work-ing with Pediatric Hospice and Palliative Care Physicians and Genetic Counseling students from The Emory School of Medicine, I am intentional in providing students the experi-ence of witnessing how word choices often negatively impact the emotional well-being of the families we serve. Working with babies with T13 and T18 has compelled me to advo-cate for their families from the first interac-tion. Language choices create atmosphere, and every life is worthy of an atmosphere of honor.

So how do we change the perspectives of the medical community so that they are more sensitive to parents and more willing to see the value in the lives of infants with T13 and T18?

Because I have witnessed the thriving spirits of infants with T13 and T18, I have taken on the mission to change the perceptions around these diagnoses to our medical communi-ties in Atlanta.

We are in our seventh year of hosting genetic

c counselors from Emory University through our pediatric hospice program. I ensure they meet children living with T13 and T18. I ensure the students sit with the families, see how babies are thriving in the midst of medical complexities, and note how each child's presence enhances their families and communities. These young medical minds are the ones that will sit across the table from parents in the future when prenatal diagno-ses are discussed and treatment options/care plans are established. These are the medical pro-fessionals that can connect families to communi-ties to determine the best treatment options for their babies. These are the young minds that will change the care of future generations of T13 and T18 families. I rest knowing that, because of the families we care for, the conversations led by these future genetic counselors will look very different than they did ten years ago.

Statistics indicate that infants with T13 and T18 born in Georgia have better outcomes than those born in other states. How is the care in Atlanta different than the care say in Charlotte, NC for these babies?

For babies that are welcomed into our care, we have a set community resource plan. We align our approach with concurrent care (established by the ACA 2010), which allows parents to seek appropri-ate interventions along with hospice care when an infant is diagnosed with a life limiting illness. We incorporate a resource in GA known as “Babies Can't Wait.” Babies Can't Wait is a community program of Physical Therapists, Occupational Therapists, and Speech Therapists to assist in home care of babies at risk. We ensure each of our babies are connected with a primary pediatri-cian for well baby visits, check ups, and immun-izations. Being proactive in care planning allows us time for effective symptom management, space for the disease to be individually expressed, and to ensure the child has a medical team that is focusing on enhancement of life quality.

We lay the foundation and allow the infants to direct the care by their responses, and by en-suring we have the foundation of care established, should the infant graduate our program, they have a team in place to allow each child to thrive in their own timing. Many of the graduates of our program are discharged from hospice when they are around two years of age.

Also, by engaging our medical community in the early, on-going care of babies with T13 and T18, the perceptions of these babies are changing and that’s another way we are having a positive im-pact on our little corner of the world.

Be Not Afraid 15237 Fred Brown Road Huntersville, NC 28078

We Need You! If you are interested in supporting BNA, there are many ways you can help. Let us know what skills you have that could benefit the parents we serve—just use the contact button on our site and a staff member will respond within twenty-four hours to discuss volun-teering. Financial donations are always appreciated and can be made at the BNA website via PayPal.

Who are we?

Be Not Afraid is a private non-profit that provides a free service of case management to parents carrying to term following a prenatal diagnosis. As a Catholic organization, we believe that every child deserves to be welcomed, no matter how brief their life may be or the nature of their disability. Our support is peer-based and parent-centered.

www.benotafraid.net Email: benotafraidnc@live.com Phone: 704-948-4587

B e N o t A f r a i d — C h a r l o t t e , N C

What Parents Say About BNA...

“It is hard to put into words how BNA impacted our lives and helped us navigate through the months of planning the arrival of our daughter, Emery, after receiving a prenatal diagnosis. They pro-vided invaluable compassion, support, and guidance along each step of the way to ensure that we were prepared as we could be. Every-one who is a part of BNA certainly has a gift from God and have found a unique way to use it for the benefit of others. We cannot thank them enough for everything they did for our family. We are blessed that with their guidance, all our little girl knew was love.”

—Mom of Baby Emery, May 20-26, 2019

...we can say with confidence, “The Lord is my helper; I will not be afraid.” —Hebrews 13:6