She Made Me a Mommy: Emmy Buffkin's Life Remembered BNA Board member Kristen Buin and her husband, Jason, recently organized a memori- al fundraiser for their daughter Emmy. Emmy had been prenatally diagnosed with Trisomy 18 and lived for 118 days. Family and friends donated over $5,000 to BNA in memory of Emmy on the anniversary of her birth. Kris- ten and Jason celebrate Emmy's birthday every year, but this year they sent out sixty- one cards (each with a different picture of Emmy) explaining what BNA’s support had meant to them and asking that donations be made in Emmy's name. "As a board member I am even more in awe of BNA's amazing work," Kristen says. "They truly help every family they support." BNA relies completely on donations and fundraising efforts to provide its service year to year. "There are times when we don't know if the organization will have the funding needed to continue," adds Kristen, "And I knew my amazing friends and family would be happy to help, especially in Emmy's name." We thought this fundraiser provided a great opportunity to remember Kristen and Jason's story—and to share with you how they were referred to BNA, what a blessing Emmy was, and how she still impacts their lives today. Tell us about Emmy's diagnosis and how the news was given to you. We found out that something wasn't right at our 20-week anatomy scan. Emmy had sever- al markers for a genetic syndrome, and my OB predicted that it was Trisomy 18. A few Inside this issue: A Baptism Kit for Baby 3 What Parents Say About BNA 4 Fall of 2019 Continued on page 2 days later an amniocentesis confirmed that diagnosis. Those doctor appointments were some of the worst days of our lives. Did the doctors offer any hope at diagnosis? The doctors offered almost no hope at diag- nosis. We were told that this diagnosis was not compatible with life and that our baby would likely die in utero over the next few weeks and if she made it full term, she would likely die during childbirth. I do remember the doctor saying that there is no way of knowing if she will survive or how long, but the tone in her voice was very negative and very dire. She did say that some children do live, but are normally "vegetables" and have no real quality of life. When did you hear about BNA? We were completely devastated after re- ceiving our diagnosis and all of our family and friends were desperately trying to help us. My husband's uncle, who is a Lutheran pastor in Augusta, Georgia, called us to tell us that he’d found an organization online who helped families with difficult prenatal diagnoses. It just so happened that this group was based out of Charlotte, where we lived at the time, so my husband reached out to Tracy that same day. I think we spoke over the phone with her the very next morning. Was the BNA approach to Emmy's diagnosis different than the doctors? How so? Tracy instantly gave us the love and sup- port we needed. And when I say us, I mean all 3 of us; Jason, myself, and most im- portantly, Emmy. She referred to our daughter as a blessing and an angel and I knew right away that she truly valued our
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She Made Me a Mommy: Emmy Buffkin's Life Remembered
BNA Board member Kristen Buffkin and her
husband, Jason, recently organized a memori-
al fundraiser for their daughter Emmy. Emmy
had been prenatally diagnosed with Trisomy
18 and lived for 118 days. Family and friends
donated over $5,000 to BNA in memory of
Emmy on the anniversary of her birth. Kris-
ten and Jason celebrate Emmy's birthday
every year, but this year they sent out sixty-
one cards (each with a different picture of
Emmy) explaining what BNA’s support had
meant to them and asking that donations be
made in Emmy's name. "As a board member
I am even more in awe of BNA's amazing
work," Kristen says. "They truly help every
family they support."
BNA relies completely on donations and
fundraising efforts to provide its service year
to year. "There are times when we don't know
if the organization will have the funding
needed to continue," adds Kristen, "And I
knew my amazing friends and family would
be happy to help, especially in Emmy's
name." We thought this fundraiser provided a
great opportunity to remember Kristen and
Jason's story—and to share with you how
they were referred to BNA, what a blessing
Emmy was, and how she still impacts their
lives today.
Tell us about Emmy's diagnosis and how the
news was given to you.
We found out that something wasn't right at
our 20-week anatomy scan. Emmy had sever-
al markers for a genetic syndrome, and my
OB predicted that it was Trisomy 18. A few
Inside this issue:
A Baptism Kit for Baby 3
What Parents Say About BNA 4
Fall of 2019
Continued on page 2
days later an amniocentesis confirmed that
diagnosis. Those doctor appointments were
some of the worst days of our lives.
Did the doctors offer any hope at diagnosis?
The doctors offered almost no hope at diag-
nosis. We were told that this diagnosis was
not compatible with life and that our baby
would likely die in utero over the next few
weeks and if she made it full term, she
would likely die during childbirth. I do
remember the doctor saying that there is
no way of knowing if she will survive or
how long, but the tone in her voice was
very negative and very dire. She did say
that some children do live, but are
normally "vegetables" and have no real
quality of life.
When did you hear about BNA?
We were completely devastated after re-
ceiving our diagnosis and all of our family
and friends were desperately trying to help
us. My husband's uncle, who is a Lutheran
pastor in Augusta, Georgia, called us to tell
us that he’d found an organization online
who helped families with difficult prenatal
diagnoses. It just so happened that this
group was based out of Charlotte, where
we lived at the time, so my husband
reached out to Tracy that same day. I think
we spoke over the phone with her the very
next morning.
Was the BNA approach to Emmy's diagnosis
different than the doctors? How so?
Tracy instantly gave us the love and sup-
port we needed. And when I say us, I mean
all 3 of us; Jason, myself, and most im-
portantly, Emmy. She referred to our
daughter as a blessing and an angel and I
knew right away that she truly valued our
Page 2
...baby. As soon as the doctors con-
firmed a Trisomy 18 diagnosis for Em-
my, they completely stopped caring for
her and all of a sudden there was only
health care consideration for me. It was
shocking to me—especially being a
health care professional myself—that
they did not value this baby's life. It's
heartbreaking enough to receive this
diagnosis, but to not feel 100% support-
ed by your health care team—who you
are placing so much trust in—was just
another harsh letdown. I can't imagine
not having had BNA by our side.
What are your best memories of your
pregnancy with Emmy?
Emmy loved bluegrass music! We would
put it on and turn it up and she would
dance around in my belly! It just made
me happy to think that she was getting
to enjoy something that her dad and I
love and want to share with her! Even
after she was born, if she was upset, we
would play bluegrass and she would
almost always calm down. I also read to
her a lot and sang to her and told her
how much I loved her every minute I
could while she was moving around in
my tummy. We did not know if she
would make it out alive so we wanted to
cherish every second.
Tell us about the day she was born.
I was very anxious because I was 42
weeks pregnant and they were going to
induce me in 2 days. I did not want to
go in, because inside my belly she was
safe and she was alive and I just wanted
to protect her for as long as I could. All
of our family members were due to
come into town to be here for us and I
was home alone this last afternoon. It
had been very hot in Charlotte and
there was this intense, but quick rain-
storm and when it was over there was a
rainbow over our backyard. It was only
over our yard and nowhere else. This
calm came over me and I knew then
that I was ready to meet her! The entire
birth process was stressful and scary.
Jason read "On the Night You Were
Born" and we cried together for this
sweet little thing that was not supposed
...She Made Me a Mommy
(continued)
to live. And then she was here! She was born alive
at 5:11 am and she was 5 pounds 5 ounces of the
most sweetness you could imagine. She did well for
the first few hours but then as time went on we
quickly realized she needed oxygen and a feeding
tube. Judy was there with us and advocated for our
sweet girl. Jason's uncle baptized her and every one
of our family members were there to hold her and
tell her they loved her. It was such an amazing day
of love and togetherness. There were many tears
that day, both of love and uncertainty.
What was it like to take her home?
It was a complete whirlwind. The doctors essential-
ly let us go home the next morning with a warning
that she would probably just die some time in the
next few days. Emmy was sent home on hospice
and she had a feeding tube and was on oxygen. It
was amazing getting to take her home because we
were not expecting to get to have that time with
her but at the same time it was terrifying. We did
not sleep much for the first few days, expecting the
worst. But eventually, Jason said to me, we can't
cease to live our lives and just sit around waiting
for her to die. So we made a promise to her and a
promise to each other that we would live our lives
WITH her.
What was her life like at home?
Her life was full of love and snuggles and music.
She loved to go outside and we had an extra long
oxygen cord so that she could be out there every
day. She had constant visitors of friends and family.
They all loved her and brought her gifts and flow-
ers. She was an extremely loved little girl. All she
ever knew was love.
When did you get the idea to take weekly pictures of her?
My sister Megan came up with the idea and she
made a few of the early signs. We knew we didn't
have the luxury of doing the monthly milestone
photos so for us—each week that she was with us
was an amazing milestone.
Tell us about Emmy.
She was an angel. She was feisty but sweet. She
hated her tubes. She loved music and her mom
and dad. She was one of my greatest blessings.
She made me a mommy.
What impact did her life have on your life and in
your marriage?
She taught us that life can be unpredictable.
None of us are promised a happy ending. But
mostly, she taught us how strong love can be. She
also made us realize that we can get through
anything with love and support. Having Emmy
has strengthened our marriage immensely by
creating this extremely strong bond. When I am
feeling sad and missing my sweet girl, Jason is the
only other person who knows exactly how I feel.
After Emmy died, Jason and I went on a long road
trip together. There we promised each other—
and most importantly Emmy—that we would live
our lives for her and try to make her proud.
Tell us about the fundraiser you organized around
her anniversary.
I was blessed to be elected to the Board of Trus-
tees for BNA this past January. Since then, I am
more in awe of this organization than ever. These
ladies do such amazing work and truly help every
family they support. But the truth is, BNA runs
completely off of donations and there are times
when we don't know if we will be able to continue
our work. I knew that my amazing friends and
family would be happy to help, especially in Em-
my's name so I had the idea to send out some
cards with her picture in it. I sent out sixty-one
cards, each with a different picture of our girl, and
almost everyone has sent me a sweet text message
or card saying how much it touched them. I'm
hoping that we make a difference and help this
great organization.
What would you say to parents experiencing a
prenatal diagnosis?
I would tell them that right now things seem
impossible and bleak but there is hope on the
other side. I would tell them to take what the
doctors tell them with a grain of salt. They have
no way of knowing if or when their child will die.
Advocate for your baby when no one else will. I
would promise them that their baby will change
their life for the better. You will never regret giv-
ing your baby the chance to live and love and be
loved by you!
Page 3 Fall of 2019
A Baptism Kit for Baby: Meet Volunteer Anita Misko
Baptism Kit
Many BNA volunteers come to their work with
BNA through their own experience with prenatal
diagnosis. That is the case with Anita Misko, who
makes beautiful baptism kits for BNA babies.
Anita was inspired to volunteer after seeing the
essential place that baptism held in the birth
plan her daughter and son-in-law developed with
BNA for her grandson, Baby Luke.
Like any grandmother, Anita lights up when she
describes her grandson. Luke was “So precious! …
He was beautiful! One of his most striking fea-
tures were his eyes; when they were open, he was
so alert. Since we didn’t know if he would make
it to term, it was such a blessing to actually meet
him, caress him, sing to him, talk to him...all
special moments I hold dear in my heart. Alt-
hough we had Luke only thirty-two days, I really
feel it truly was a gift from God for the time we
had. I know I will see him again!”
Anita’s daughter Melissa first learned of BNA
from a friend in Pennsylvania following Luke’s
prenatal diagnosis with a complex heart defect.
She was so happy that her daughter and son-in-
law had the resources and support that they
needed to move forward following a life-
shattering diagnosis. BNA offers parents not only
guidance, but peace.
As a grandmother, Anita’s position was often
doubly difficult as she worried not only for the
well-being of her grandchild, but also for the well -being of her daughter. “She is my child and my heart ached for her,” Anita shares. “I wanted to
make it all better for both of them. I prayed for
both and ultimately had to leave it all in God’s hands...this was so difficult.”
The baptism kit Luke’s parents received
was a very meaningful part of the love they
received during their journey. Anita want-
ed to be able to give back to BNA for all
they did for Luke and his parents, and
decided that making baptism kits would be
the perfect way. She hopes that each family
receiving a kit will know that “they are not
alone. Although they don’t know me, they
can be assured each kit has a special prayer
going out for them.”
Anita believes that the last thing parents
need to worry about is figuring out how to
baptize their child, so to make it easy, each
kit includes a bottle of holy water, the
baptismal prayer, and a small hanging
Madonna and Child. “I chose Mary holding
the child Jesus to give the moms a remem-
brance that Our Lady knows the pain of a
suffering child and losing her own Son,”
she explains. “Mother Mary shares their
sorrow.”
Luke’s brief life taught his grandmother
not to take a moment of life for granted,
and to recognize how precious each life is.
No longer does she assume that every
pregnancy will be uncomplicated, and
every time she sees a pregnant woman, she
says a silent prayer that God will protect
mother and child.
Anita, Baby Luke, and Luke’s Aunt Abby
Her advice to parents experiencing what her
daughter did is, “Never lose hope. Every
child is a miracle. Cherish whatever time
you have to hold and love your child. They
will always be a part of you.”
To the grandparents of babies with a life-
limiting prenatal diagnosis, Anita offers this
advice: “Be present for your chil-
dren...praying always for the grace to be
strong for them. It’s okay to be angry; we
have a loving God who is with us always
even when we feel so alone and discour-
aged.”
“I know God has a plan for all of us...and it
is good! I think Luke’s life made me realize
how we are not in control...only He is. The
love and support we received was truly
something I will not take for granted and I
try to be more aware of others in difficult
situations.” She concludes, “Every life is
special...no matter how long you are on this
earth..”
Anita’s baptism kits help to affirm that
reality for every BNA family who is blessed
to receive one.
And even now, Luke’s life continues to
touch those around him, even those who
never had the privilege to meet him in per-
son.
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.