good and perfect gift is from God.
On October 9, 2008 God blessed
our family with a very special gift that was both good
and perfect…the beautiful life of our dear son
Nathaniel Douglas. Although Nathaniel’s body did
not work in a way that would allow him to live a long,
healthy life here on earth, his little body was exactly
the way God designed it…which made it perfect
in every way.
Our story begins on a joyous
day in February when we first discovered we were pregnant
with our second child. Our first born, Julia, brought
so much love and happiness into our lives, so we were
thrilled with the news that our family was continuing
to grow! With a history of infertility, we were also
a bit surprised and relieved at how relatively quickly
we were able to conceive and without any fertility drugs!
Our prayers had been answered, and from the moment we
learned about our pregnancy, it was apparent to us that
this baby truly was a gift from God!
Our joy turned to sadness,
when half-way through our pregnancy we received the
devastating news that our dear baby had a rare, chromosomal
disorder called Trisomy 18. Although we were deeply
saddened by this diagnosis, we were determined to celebrate
the time we did have with our son. Realizing that most
of Nathaniel’s life could very well be during
our pregnancy, we were committed to creating as many
family memories with our son as possible. Family walks
to the park, outings to the Dairy Queen for yummy treats
and trips to visit relatives quickly took on new meaning.
Julia was only 2 at the time, but we were able to find
many ways to include her in our celebration of her little
brother. She loved rubbing Mommy’s tummy, “reading
stories” and singing songs to Nathaniel and never
missed an opportunity to shower him with hugs and kisses.
We were blessed with a beautiful pregnancy filled with
many precious moments with our son. By the grace of
God, every day began and ended with prayers thanking
Him for the beautiful lives of our two children.
This was however, a pregnancy
we did not want to end. Through a follow-up Level II
ultrasound with a perinatologist and pediatric cardiologist,
we were informed that Nathaniel’s physical condition
was very serious. In addition to a heart problem, missing
kidney, and choroids plexus cysts which we learned about
at our first ultrasound, we now discovered that Nathaniel’s
lungs were underdeveloped due to a diaphragmatic hernia.
We were told that his greatest struggle would be transitioning
to breathing on his own after birth, and the doctors
did not think we would have the months, weeks or even
days with our son that we had been praying for. Rather,
it was likely that Nathaniel would live for just a half
hour to an hour if he survived birth. It was only after
seeking this additional ultrasound, hearing the medical
advice of specialists, visiting with our priest, talking
with our parents and of course much prayer that we were
able to decide that comfort care measures would be the
best option for our dear son. And so, while we continued
to celebrate the perfect gift he was to our family,
we began to prepare for his birth.
As we planned to welcome Nathaniel
into our lives, we found ourselves surrounded with so
much love, support and prayers from family, friends
and the community. We were overwhelmed by the wonderful
resources available to assist us throughout our journey.
Through these incredible people working with these wonderful
organizations we had the opportunity to take beautiful
maternity photos as a family, work with a nurse educator
to write a thorough birth plan, coordinate with hospital
staff to ensure our wishes would be respected, consult
with a child-life specialist to consider the best ways
to communicate Nathaniel’s condition with Julia,
and finally make plans for hospice care in the event
that Nathaniel was strong enough to come home with us.
In addition, we were deeply touched by the beautiful
people at our parish and many others praying for us
and supporting us along the way. Although the journey
was an incredibly difficult one, never once did we feel
abandoned or alone, and we were always reassured by
our faith and the generous outpouring of love and support
we received from those around us.
It was this support that sustained
us as the day of Nathaniel’s birth approached.
All along it had been our desire to avoid induction
in hopes that labor would occur naturally. On Nathaniel’s
due date however, my blood pressure was quite elevated,
and it become medically necessary to schedule an induction.
Two days later on October 9, 2008, we were at the hospital
anticipating Nathaniel’s birth.
Although we had hoped and prayed
that we would experience joy on his birthday, we honestly
didn’t know if we would. All throughout our pregnancy,
and especially on that day, we often reminded ourselves
of a message given to us by a dear friend, “Where
there is fear there is no faith and where there is faith
there is no fear.” We knew the only way to approach
this experience was to place our complete trust in Jesus,
and he would continue to walk this journey with us.
Throughout the morning labor
was progressing well. By late morning however, the nurse
informed us that Nathaniel’s heart rate had dropped
significantly for quite some time and that is was likely
he would be born still. We immediately stopped monitoring
his heart rate, and through our tears, did the only
thing we could think of at that moment, and prayed.
A few hours later, at 2:03
pm Nathaniel was delivered, and as planned, placed directly
on his mommy’s tummy, where we had a soft cozy
blanket waiting for him. You can imagine our complete
JOY, when at that time, his chest rose slightly as he
took his first, peaceful breath! God had given us the
gift of a live birth for our dear son! Daddy immediately
baptized Nathaniel, and shortly after, our parents and
priest came in to the room. Nathaniel was confirmed
by our priest, and admired by his grandparents. They
rejoiced with us as we marveled at the newest member
of our family…so good and perfect! In his glorious
47 minutes of life, each of them an absolute gift, we
experienced beautiful moments with our son and will
treasure that time always. His entire life was spent
wrapped in the loving embrace of his mommy and daddy,
and all he knew was pure love. At 2:50 pm he was peacefully
received into the hands of God. After his death, we
bathed him and introduced him to his loving big sister
who enjoyed holding him and showering him with more
hugs and kisses.
In Nathaniel’s life and
death, we have learned so much about God’s love
for us and the way He is calling us to love one another.
As our priest said in the homily at Nathaniel’s
funeral, “… Nathaniel received royal treatment
from his family. Let us never forget that every person
is a gift from God and every person, in the womb or
out of the womb, deserves royal treatment. No matter
how much time we may have, nine months and forty-seven
minutes, or many years we should seize each moment and
love as well as possible as much as possible.”
Indeed, each person’s life is a precious gift,
good and perfect sent directly from God!
It has now been eight months
since Nathaniel’s death, and not a day goes by
that we don’t think of him and desire to see him
again. Although there is still some sadness each day
as we long to hold him in our arms again, we also find
peace in knowing that he is joyfully watching over us
and praying for us from God’s heavenly kingdom.
It is our firm belief that with God’s grace we
will some day be reunited as a family. In the meantime,
as we continue to accept God’s loving plan for
our family, it is by His grace we are able to begin
and end each day with a prayer thanking Him for the
wonderful gifts He has given us in the lives of our
three children. Yes, we are expecting our third child,
and our baby is due October 16, 2009 – exactly
one year and one week after that beautiful day when
we welcomed our dear Nathaniel into arms. What a good
a perfect gift!
to Trisomy 18 Stories
-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.