Newborn Health Initiative champion Jennifer Degl recently penned an article in the International Neonatal Consortium (INC) newsletter, sharing her story and experience as the mother of a premature baby. In the piece, Degl emphasizes the importance of INC’s role in increasing the number of neonatal drug therapies available in order for this extremely vulnerable population to grow up and live happy, healthy lives. “With proper timing and communication strategies in place, I believe that the INC can work to increase the neonatal drug options and availability of those drugs, so that we can improve the lives of our future neonatal population,” wrote Degl. “I am excited to be a part of such important work.”
Why Our Work in the INC Matters: A Mother’s Perspective
Jennifer Degl
Five years ago after delivering my daughter at 23 weeks
gestation, I had no plans to become an author or an
advocate for premature babies, but the universe kept
telling me otherwise. As a secondary science teacher and
mother of four children, including my premature baby, I
had little time for much but I could not suppress the
feeling that I had to use our story for something greater.
I felt I needed to share both our pains and successes with
the world so that other families could benefit from
learning about what we went through. This is what led
me to become a writer, speaker, and advocate and also
how I became involved with INC.
My daughter was born 17 weeks early and weighed just
575 grams. She was only 11 ¾ inches long. I named her
Joy because that is what I felt after meeting her for the
first time. I was not able to see my daughter for several
days after her birth, due to my complications following
her delivery. I suffered from placenta percreta and
almost lost my life several times during my pregnancy. I
was not able to hold my daughter until she was over a
month old because of her fragile condition. The 121 days
that Joy spent in the NICU were difficult on our whole
family and we all found different ways to deal with our
emotions. I decided to write, speak and become
involved in organizations that effect real change and
allow the preemie parent voice to be heard. INC is doing
an impressive job at just that.
This past March, I had the privilege to represent The
Morgan Leary Vaughan Fund and the Preemie Parent
Alliance (PPA) as co-chair of the Communications
Workgroup Breakout Session at the 3rd Annual FDAINC
Neonatal Scientific Workshop*. Both organizations
are dedicated to advocating on behalf of premature
babies and their families in several areas, including
research into the preventing and treating the various
diseases caused by a premature birth and I was honored
to represent them.
As a parent of a micro preemie, I am all too familiar with
the feelings of overwhelming emotion, fear, stress and
guilt that accompany a premature birth. These feelings,
along with the likelihood of a mother’s delivery trauma
and the resulting physical and emotional wounds can
cause a parent to be unwilling to participate in a
conversation about enrolling their baby in a clinical
study. Most parents understand that pharmacological
advancements cannot be made without research, but
remain resistant. Parents who are approached in a
certain way and time, by the correctly trained medical
personnel, are more likely to consent to trial research.
This, along with a literature review on the topic of
neonatal clinical trials, was discussed at the Breakout
Session. One goal of our workgroup is to come up with
strategies to enhance communication surrounding
research between all stakeholders in the neonatal
intensive care unit including physicians, nurses, nurse
practitioners, research scientists and parents.
As a representative for parent organizations and as a
mother who spent four months in the NICU due to my
daughter’s premature birth and several weeks in the
PICU because of her Bronchial Pulmonary Dysplasia, I
can speak to the fact that most preemie parents want to
participate in something that might not only benefit
their baby but also help future premature babies. No
NICU parent wishes this experience on another parent.
C-Path saw a void in this space and launched INC to
accelerate the development of safe, effective therapies
for newborns. This puts INC members in a key position -
one that allows us all to be “pioneers” if you will, of the
future of neonatal research. As medical knowledge and
technology advances, babies are surviving at much
earlier gestations and these babies need the best chance
at not only survival, but at the best quality of life that
medicine allows. I have no doubt that INC can
accomplish this.
With proper timing and communication strategies in
place, I believe that the INC can work to increase the
neonatal drug options and availability of those drugs, so
that we can improve the lives of our future neonatal
population. I am excited to be a part of such important
work.
