Testimonial
Imagine being 25 weeks pregnant and hearing the words,
“
Your baby
boy has a rare, complex congenital heart defect and will die soon after
birth.”
Those are the words my husband and I heard after going in for a
routine sonogram, having had till then a healthy and normal pregnancy.
The date was July 28, 2003. As we tried to absorb the words we had just
heard, we tearfully looked at each other and we both just went numb. The
doctor continued to talk about all that was “wrong,” but we didn’t really
grasp too much beyond, “We’re setting up an appointment for you with
some specialists…”
Over the next few weeks, we met with two different sets of maternal-
fetal specialists and pediatric cardiologists to narrow-down the diagnosis,
to discuss our options, and to try and answer all of the questions we had
on variations of
Hypoplastic Left Heart Syndrome, a complex, single-
ventricle defect.
We went about living our everyday lives as normal as we
could for Jean-Luc, our precious then-3-year-old little boy, although the
pain in our hearts was sometimes unbearable. We prayed every day and
had our families, friends, and friends of friends also praying. We needed a
miracle!
We had three options: (1) Abort, which was not an option we even
remotely considered; (2) multiple open-heart surgeries over a few years,
which we researched endlessly; and (3) comfort care, which we ultimately
decided on. One statement from one of the specialists still sticks with me
today. While discussing the surgeries our baby boy would have to endure
due to the scope and magnitude of his many defects and “missing parts,”
he said, “I do feel like we would be doing something TO the child instead
of FOR the child.” Even though our decision for comfort care was made,
as the parents of one healthy little boy and my carrying in-utero another
precious little boy with a “broken” heart, we both prayed for peace with our
decision and placed our baby in God’s hands!
The next few months were a blur. As you can imagine, we were living
day-to-day, praying, and crying often. It was a time of unspeakable sadness.
We met with our parish Priest for an Anointing of the Sick, and we also
met with Hospice to discuss the role they would play once we brought our
little boy home from the hospital – he was not expected to live beyond a
week. My husband, Andre’, also met with our Church to discuss funeral
arrangements, including a burial plot adjacent to the Church.
Around this time, a good friend of ours, Father Mark Beard, suggested
we visit a nun living in Baton Rouge named Sister Dulce. He had told
Father Jeff Bayhi about our situation, and they both thought it would be a
good idea, so he made an appointment for us to see her. We joked with each
other saying, “What’s the worst thing that can happen? We will have a holy
nun praying for all of us!”
I remember walking in to meet Sister on our initial visit and one of the
first things she said was, “Why are you taking steps to bury your child…
he’s not even born yet!” She could not have known Andre’ had just went to
St. George and to Hospice a few days before to make those arrangements.
Indeed, because of our grief, we hadn’t told anyone what we were doing.
It was now mid-October – I was due November 12th – and we met
with Sister once a week for the next four weeks. She layed her hands on my
belly and talked to Papa. She said that Papa wanted to know if we accepted
His will in all of this and we answered, Yes. She told us a lot, but the most
important things were that our son was going to be fine; we would see him
grow up; she could see his beautiful blue eyes; that things would get worse
before they got better, but to keep praying and always trust in God. She
told us that our son wouldn’t be a professional athlete, but he’d grow up to
do the things most other kids do and that we should steer him to the arts.
We left our initial visit with Sister blessed with an inner peace – the
Peace of God – that I can’t even describe and which we carry to this day!
It was a true blessing. I remember her telling us to rejoice and be happy
with my pregnancy – and from that day, we were! We trusted God would
take care of us and we trusted in the words Sister told us. BUT, we still
questioned things sometimes. We didn’t know at that time that Sister Dulce
had been given a healing ministry from God, and we wondered how the
doctors could be wrong. We believed in God’s grace and had accepted His
will, but we still thought, many times, how could this be. We were torn
between what our hearts were feeling, what our minds were thinking, what
the doctors had advised us, and what Sister had told us.
On November 12th, our beautiful baby boy, Jean-Paul Laurent
Bourgeois, was born and we were blessed to have a very large contingent of
family and friends at Woman’s Hospital, all of whom thought this might be
their only chance to see and hold Jean-Paul before he died. After an agonizing
length of time, several hours of tests and studies, our pediatric cardiologist
finally came into our room and said, “Things have changed; I’m not sure
how to explain this, but your son has a few more ‘heart parts’ to work with
and if we fly him to Ochsner in New Orleans and do the staged surgeries,
he’ll be okay.” I am sure Andre’ and I both had a stunned look on our faces
when the doctor said, “Now, he won’t be a professional athlete…” Andre’
and I looked at each other and thought, Sister told us that precise phrase
about a month ago!
Amedicalflightteam
of specialists came to the
NICU and hooked up
our brand-new baby boy
to all kinds of machinery
in order for him to fly to
Ochsner in New Orleans.
We were filled with joy,
sadness, and, truly, some
confusion as well. We
were trying to process
everything our pediatric
cardiologist told us, as well as trying to piece together all of the information
Sister had told us over the past four weeks as we held hands and silently just
watched the helicopter disappear to nothing but a dot in the sky.
Jean-Paul had his first open-heart surgery at six days old and immediately
had complications, which led to three other procedures and surgeries in the
first few weeks of his life. His first surgery lasted about eight hours and,
while the doctors were wheeling him past us to the PICU, his heart stopped!
They had to rush him into the PICU, create a surgical suite on the spot, and
then re-open his little chest that they had spent the last two hours closing!
Yet, we remembered Sister told us that things would get worse before they
got better, and although we were anxious and worried about our newborn
baby going through so many open-heart surgeries and medical procedures
in the first few weeks of his life, we continued to put our faith in God, and
Jean-Paul was discharged about six weeks later. The date was December
22
nd, our older son’s then-4th birthday and just in time for Christmas. It
was the best Christmas present Papa could give us!
Jean-Paul had another round of surgeries at only seven months of age,
and we called Sister when he was going through some serious problems
(
another post-surgery complication requiring an immediate follow-up
corrective surgery), and she put us at ease and told us to continue to pray
and trust in Papa. He was discharged after only eleven days in the hospital.
It was around this time that Andre’ and I began to reflect on how much our
lives had already been forever changed. We began to more-fully realize and
understand that God gives you what you need; not what you want. In Jean-
Paul’s case, He gave him enough “heart parts” to work with, and, for us, the
gifts of faith, trust, and peace.
Things were going pretty well at this point and, around a year later, I
began to volunteer at the Sister Dulce Ministry Center, and Andre’ began
volunteering as a Board member of the Sister Dulce Foundation doing
whatever Papa needed him to do. What a blessing that became. I so looked
forward to my one-day-a-week of volunteering and, although visitors said
we brought them joy and smiles, they did more for my faith and me than
I could ever imagine having done for them. It wasn’t really until then that
I ultimately grasped the gift that Papa has given to Sister Dulce. Being able
to see the miracles that literally took place on a daily basis forever changed
my life.
Jean-Paul continued to thrive, but in July of 2007, at 3 years of age,
it was time for his final-staged surgery. Our lives were good, the emotional
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