The Bleeding Times- Spring 2017

CARRIER’S
GUILT
BY JASMINE L. EAGLIN
Our Story
Our son’s diagnosis came with an abundance of guilt. After
two full days of labor and four hours of a grueling delivery,
the first moments of our son’s life—moments that should
have been filled with relief and joy were instead riddled
with fear and remorse. It was a traumatic delivery; the
epidural had long worn off and no matter how hard I tried,
my baby would not exit the canal. My instincts screamed
for a C-section—in fact, I demanded one because the
process didn’t feel quite right. I had a great team in place,
but to their knowledge (and my own), there was no medical
emergency that required surgical intervention. Yet, by the
fourth hour of delivery, the level of my mental and physical
exhaustion required medical assistance and I opted for a
vacuum extraction. I’ll never forget the joy on my husband’s
face when they said, “It’s a boy!” Aloysius was a whopping
9.2 pounds. Sure, pregnancy was uncomfortable and labor
seemed impossible but he was finally here, happy and
healthy. I genuinely thought the hardest part was
behind us.
For years before my son’s birth, I never understood I could
potentially be a carrier. What I did know is that I have three
cousins who were managing their severe hemophilia. I
knew they had to be careful physically. I knew they had
spent a substantial amount of time in the hospital during
their youth. I knew they had to take special medication
for bleeding episodes. And I knew this condition primarily
affected boys. Unfortunately, I had limited knowledge about
what that meant for me. My mother is the middle sister
and has two daughters. Her oldest and youngest sisters
have three sons between them; all with severe hemophilia
A. And we have no prior family history of hemophilia, which
we could track past their diagnosis. My mother watched
as her sisters struggled raising children with this bleeding
disorder and for a long while assumed she was lucky
because it skipped us. The reality, however, is it was just a
matter of time before hemophilia resurfaced again.
When we found out we were expecting, my husband and
I decided to keep the gender of our first-born a surprise
until delivery day. You don’t get too many happy surprises
in life and we wanted to experience this one, even if it was
old-fashioned of us. Hemophilia had never crossed my
mind in a serious way. After all, I naturally assumed that
if hemophilia were truly a danger to my child, or myself, I
would have known by that point. Today, I realize that there
were a few red flags once I finally had my son in my arms.
His head was unusually large and balloon shaped. At the
foot of the hospital blanket in which he was wrapped, a
large stain of blood tarnished the sheet at the area of his
heel stick. I remember the nurses urging me to get rest and
taking my son to be cared for in the nursery, but something
wasn’t right.
It took only twelve hours for those vague feelings of unease
to turn to panic when my son was admitted to the NICU. I
remember being woken sometime between three and four
in the morning. The physician on duty explained that blood
was pooling to my son’s head and he required a blood
transfusion. There was a severe concern over potential
brain damage if the bleeding was intracranial. I looked at
her for a minute in shock and my eyes filled with tears as
I said the words “hemophilia…it has to be hemophilia.”
The physician’s expression shifted from one of concern
to curiosity as she asked my why I thought so. “Because I
have three cousins with hemophilia.” I remember the guilt
that washed over me in that instant: Why hadn’t I realized
beforehand? Why didn’t I do more to educate myself? I
called my youngest aunt first to find out what medication
was needed—she and my uncle were devastated. I called
my mother; she called her mother and oldest sister. Three
generations of carriers and we all felt the horrible weight of
guilt. Because I didn’t know my carrier status and because
I struggled during delivery, my son resided in the NICU for
eleven days on a 24-hour drip of factor therapy.
Carrier’s Guilt
When you find out you’re a carrier and realize you’re
essentially responsible for your child’s rare diagnosis,
mothers tend to feel distress. Everything changes from
that moment forward. What really lies ahead? What kind
of life will your sons have? Will your daughters have to
go through this ordeal all over again? For some, even the
decision to expand your family is agonizingly scrutinized for
months and maybe even years. Is it the right choice for you
and your family? How will you manage this new world of
hemophilia on top of your daily challenges?
It’s okay to have all the feelings we experience as carrier
moms. The entire process from grieving to acceptance to
proactively tackling hemophilia head on has allowed me to
grow in a manner I would have never anticipated otherwise.
What we have to remember is that today, we have access
to a wealth of knowledge and medical research that
was not otherwise available to others in the hemophilia
community only thirty years ago. The advancements of
factor medications, the options for prophylactic treatment,
the flexibility to infuse at home, the medical support from
our Hemophilia Chapters and Associations, and even the
emotional support from online communities devoted
to families managing bleeding disorders. Hemophilia
and other bleeding disorders are regarded in much
different standings than they were three decades ago.
This condition is not a death sentence and no longer the
taboo it was in the 1980s. Families today educate, advocate
for, and support one another throughout this journey.
The resources at our disposal are incredible luxuries
that my aunts and cousins were not fortunate enough to
experience in childhood.
The old cliché that “knowledge is power” is undeniably true.
Additionally, being proactive is incredibly conducive to the
positive experiences you have on your personal journey.
If at any point in your family’s history hemophilia has been
suspected, get yourself tested and confirm your carrier
status. If you’re a carrier with young daughters, educate
them well and find out their status early. Research has
uncovered that carriers are often symptomatic or can
become symptomatic as we age through adulthood—an
experience my mother is going through now, but her
sisters fortunately are not. The more knowledge you have
of your family, the better you can plan for basic milestones
such as tooth extractions, pregnancies, surgeries, and
medical emergencies.
Conclusion
I am here to say that even with all that my husband and I
have experienced in our son Aloysius’ birth and diagnosis,
we couldn’t be happier with our journey. Aloysius is now
just over three years old. He is a brilliant little big guy
on prophylaxis. Through his cooperation and our sheer
determination, my husband and I have learned to infuse at
home. Aloysius is very active, loves swimming, swings at the
park, jumping off the living room sofa, listening to music,
and eating pizza and chocolate. He’ll be starting pre-k in
September, so my anxieties kick in as we enter this new
unknown phase of our journey, but a big part of me knows
he’ll be just fine as long as we continue to do our part.
I certainly understand the guilt that comes with being a
carrier, but we have learned everything we could from our
past mistakes and continue to keep abreast on emerging
research regarding the future of hemophilia. My family will
continue to learn and adapt; please know that yours
will, too.
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