get you cleaned up…and then we need to talk."
As our obstetrician helped me wipe the gel off my belly
from our routine 18-week ultrasound, I knew something
was very wrong. He explained that he thought our baby
had a diaphragmatic hernia and that it’s stomach
was entirely in its chest cavity. He also explained
why this was so serious and told us our baby had a 50/50
chance of surviving. My husband, Carl, and I were devastated.
After just over 3 years of marriage we decided we wanted
to start our family. It took us only 3 months to get
pregnant; we were thrilled! My pregnancy had been "textbook"
up to this point…how could something be wrong?
We were both young, healthy people who had planned so
carefully for this child. Our doctor wanted us to come
back in two days for another ultrasound. The baby had
been very active during this one and he wanted to be
sure of what he thought he saw. For the next 48 hours
we prayed he was wrong…he wasn’t. Our doctor
recommended we have an amnio done to check for other
problems. After much thought and prayer we decided not
to have this procedure. I was going to carry this baby
for as long as God wanted me to, regardless of what
the outcome of this test might have been. Our doctor
was very supportive of this decision and suggested we
talk with a neonatologist in Cleveland (did I mention
we live just west of Cleveland, Ohio?) and hugged us
both. We left his office stunned, angry and incredibly
We immediately told everyone
we could about our baby’s condition so that people
could begin to pray. Carl and I knew we had a decision
to make. We could trust our Lord to bring all three
of us through this incredible situation or we could
spend the next 5 months gripped in worry, anxiety and
fear. We chose to trust God. Trusting God with our most
precious gift was not easy. I remember waking up many
mornings with an overwhelming feeling of sadness. On
these days Carl and I would find scripture to memorize
and remind us of Who was in control. Isaiah 41:10 became
especially close to our hearts. "Do not fear for
I am with you. Do not be dismayed for I am your God.
I will strengthen you and help you. I will uphold you
with my righteous right hand." Our Lord was faithful…working
miracle after miracle and answering prayer after desperate
We met with specialists in Cleveland
who said they were doing a little better than 50/50
but we were not convinced they were the right people
to care for our child. After each meeting Carl and I
were uneasy. There had to be someone out there doing
better than anyone else with these babies…and
one afternoon while on the Internet I found him! I came
across Dr. David Kays’ 92% CDH survival rate and
couldn’t believe what I was reading! I printed
the info and ran to find my husband… and then
we discovered Dr. Kays was at the University of Florida…a
bit of a drive from Cleveland, OH! Thank God that this
didn’t phase my husband! Carl called information
and tracked down the number to his office. Dr. Kays
called us back within the hour! He spent over an hour
on the phone with us that evening. We learned more from
him in that hour than from all of our other meetings
with specialists combined! His treatment philosophies
and methods were different and his results were amazing.
We began to pray…would it be possible to deliver
this baby in Gainesville, FL and have Dr. Kays care
for it? We soon learned that just as we are promised,
with God, anything is possible!
We flew to FL when I was 26
weeks pregnant to meet Dr. Kays. The walls of his office
were covered with pictures of babies he had cared for
and he could tell us each child’s story. We had
another ultrasound while there and learned that part
of our baby’s liver was up in it’s chest.
Before this ultrasound we knew it’s stomach, intestines
and spleen were "up." We were devastated,
as we had prayed specifically that this would not happen.
Because the liver is so dense, it hampers lung development
more than any other organ. When we met with Dr. Kays
again after the ultrasound he had tears in his eyes
and told us this made our baby’s case very severe.
It was so clear to us that his heart and soul were with
these babies. We knew we wanted him to care for our
child. Amazingly, God worked out detail after detail.
We were blessed with the financial security to spend
as much time as needed in FL. Carl’s business
associates were willing to do the traveling he normally
does for as long as we needed. We even learned that
Dr. Kays and Shands Hospital were covered by our medical
insurance…that truly was a miracle! Our parents
were able to come down and stay with us in shifts. We
prepared to fly to FL at 36 weeks.
At 34 weeks I went into pre-term
labor and was admitted to a local hospital. My contractions
were 2 minutes apart and it seemed that Florida was
not what God had planned. Still, we prayed the contractions
would stop and God again answered. I spent the next
2 weeks on bed-rest and medication to control the contractions.
On October 6th, Carl and I flew to FL. Needless to say,
I cannot describe the relief we felt when that plane
landed! We spent the next 2 weeks waiting…seeing
movies and local sights…anything to pass the time.
Dr. Richards picked up my pre-natal care (including
more ultrasounds and non-stress tests) and we prepared
for induction on October 23rd. I decided I wanted to
try a vaginal birth as long as the baby was tolerating
it well. The induction was a success and after about
12 hours of hard labor (and an epidural that wore off…but
that is another story entirely!) and 2 hours of pushing,
our son was born. I couldn’t even count how many
people were in the delivery room…Dr. Kays had
a staff all his own for the baby plus the OB and nurses
attending to me. I remember yelling "give him to
Dr. Kays" over and over as the OB was suctioning
him. Luke was blue and listless…but his eyes were
wide open and he was trying so hard to breathe and do
what he was supposed to do. He didn’t make a sound.
His Apgar score at birth was a "1." After
Dr. Kays placed the breathing tube and "bagged"
him, he brought him to me for a quick kiss. Dr. Kays
had told us he would do this just in case it was our
only opportunity to kiss him while he was alive. I told
my son that I loved him and to fight! Dr. Kays took
him to the NICU to be placed on a ventilator.
Dr. Kays came to get Carl and
I later that evening and took us to see our son. We
had toured the NICU while I was pregnant, both at home
and at Shands, but nothing prepares you for seeing your
own baby in that environment. Dr. Kays and Luke’s
nurse explained each line attached to him. He was stable…we
were thrilled and scared. We held his hand and told
him we loved him. We prayed he wouldn’t need ECMO.
The next morning Dr. Kays came into my hospital room
and told us he wanted to do Luke’s repair sooner
rather than later. He was stable and he didn’t
want to wait any longer. Dr. Kays did his repair when
he was 16 hours old. After the surgery Dr. Kays came
into my room again and told us he had both good and
bad news. The good news was that Luke had made it through
the surgery and was stable. The bad news was his was
the worst hernia Dr. Kays had ever seen in a baby that
survived. Luke’s hernia was on his left side and
his stomach, intestines, spleen and 25% of his liver
were in his chest. His spleen had actually herniated
through an opening between his aorta and esophagus and
was pushed into his right chest, affecting his right
lung as well. His heart was pushed completely over to
his right chest wall. Dr. Kays was confident that Luke
would need ECMO within the next 24 hours…he was
right. Eight hours after his repair surgery, Luke began
to crash. Nitric oxide bought a few hours but his condition
continued to worsen. Dr. Kays called my room and told
us to come to the NICU to see Luke before he put him
on ECMO. We kissed his head, placed our hands on his
body and prayed. Dr. Kays had him on V-A ECMO in a matter
of minutes and he was stable once again. Dr. Kays told
us he was so glad we were there…that Luke would
have died had he been put on ECMO before he was repaired.
I know he was right. During our meetings with specialists
at home we were told that surgeons there (in Cleveland)
didn’t really care if the repair was done on or
off ECMO. God had led us to the right person…we
were never more sure of that fact than after Luke’s
Luke’s ECMO run was the
longest, most difficult 8 days of my life. There was
a constant risk that a blood clot from the ECMO circuit
could break loose and lodge in Luke’s heart or
brain. As hard as it was though, my son would not be
alive today without ECMO. We were blessed with a relatively
uneventful ECMO run…Luke’s oxygen saturations
remained great and his blood gasses good. Dr. Kays kept
saying that Luke didn’t know he was sick! During
this time Dr. Kays also put a chest tube in to drain
fluid accumulating in Luke’s left chest. This
fluid build-up was not allowing Luke’s heart to
move over to it’s normal position. He even put
Luke on his left side to hopefully use gravity to help
move his heart. His chest x-rays showed a left lung
about 10% the size of a normal newborn’s lung
and a right lung about 60-70%. Once the fluid began
to drain his heart began to move and his lung’s
began to expand at an unbelievable rate! The daily x-rays
were testimony to what God was doing through Dr. Kays
and the rest of the staff. Luke was extubated when he
was 18 days old…a relatively short stay on a ventilator
given how sick he was at birth! He was put on oxygen
through a tiny nasal canula and even sucked on a pacifier
that day! We were thrilled as many of these babies have
oral aversions from being on the vent for so long and
won’t tolerate anything in their mouths. We got
to hold him for the first time on that day…words
cannot describe how that felt! They began to give him
drops of my breastmilk (which I pumped every 3 hours)
through a tube running from his nose to his stomach.
It looked as though he was through the worst!
The day after Luke was extubated
he was transferred to the step-down NICU. It was time
to see how he would eat and how bad his reflux was.
We were in for a whole new challenge! The nurses began
to give him just 5 ccs of breastmilk at a time to see
how he would tolerate it. He did well initially and
the amount was gradually increased to 20-25 ccs at a
time. At this point Luke began to reflux and had difficulty
keeping anything down. Dr. Kays had told us to expect
this after he did his repair and saw the position of
his stomach and other abdominal organs. Dr. Kays put
an NJ tube in that ran from his nose to his intestine
so that he could get the nutrients he needed. He told
us that Luke would most likely need another surgery
to correct the reflux. At just 5 weeks old, Dr. Kays
took Luke back to surgery to wrap the top part of his
stomach around his esophagus (called a nissen). This
would prevent him from being able to reflux. Luke was
the youngest baby he had ever done this procedure on
but he was strong and stable and Dr. Kays thought he
was ready. Dr. Kays also put in a feeding button during
the procedure so we could feed him through a tube in
his stomach if necessary and burp him. Luke sailed through
this surgery and bounced back after only a few days.
Dr. Kays had decided to keep the NJ tube in place during
the nissen procedure so that Luke could be fed quicker
post-op and hopefully make a quicker recovery. He began
to eat better and was breathing easier now that he didn’t
have to deal with the reflux…another hurdle! A
few days later it was time to remove the NJ tube so
Luke could eat everything by mouth. When the nurse went
to remove it though it wouldn’t budge! Dr. Kays
tried too but it was stuck. Unfortunately, when Dr.
Kays did the nissen he accidentally put a stitch through
the NJ tube…he would have to take Luke back to
surgery to remove the tube. Dr. Kays felt awful but
Luke was alive and doing so well because of Dr. Kays
and the gift God had given him. We were not angry with
him…we knew this was yet another step in trusting
God. God had brought this little one so far…we
knew he would be fine! He again sailed through the surgery
and it only set him back two days…a huge relief!
He continued to progress!
The next step was to have a
head CT done to see what Luke’s brain looked like.
Since he had such an uneventful ECMO run we were confident
his scan would be normal. The day after the scan Dr.
Kays came to his bedside and asked where Carl was. I
knew instantly something was wrong and asked him to
tell me then…I couldn’t wait. He said Luke’s
head CT showed that his brain was smaller than normal.
He could not tell us what this meant or what the effects
might be. He was confident, however, that with good
parenting Luke would be just fine. Once more the Lord
was asking us to trust him…once more we trusted.
Luke was discharged just 7 and
1/2 weeks after his birth…nothing short of miraculous.
He had endured the hernia repair, being placed on and
taken off ECMO, the nissen and the NJ tube removal.
He was eating everything by mouth and was on a low flow
of oxygen. We left FL for the long drive back to Ohio…Luke
did great! Over the next few months we had physical
and occupational therapists in weekly. Slowly but surely
Luke reached each milestone! We did have to tube feed
him in addition to his bottles for about 6 months because
he wasn’t taking enough on his own. He was weaned
off the oxygen completely at 6 months and off the feeding
tube at 7 and 1/2 months. As I write this Luke is 10
months old and is doing everything normal 10-month-olds
do…crawling, pulling himself up on furniture and
giving hugs and kisses. He loves food and eats really
well! Through everything Dr. Kays has been only a phone
call or an e-mail away. He has remained involved in
Luke’s care and has rejoiced with us over the
incredible accomplishments Luke has made. We don’t
even think about his abnormal head CT…no one has
ever recommended it be repeated because Luke has shown
no signs of brain dysfunction or damage. He is a happy,
healthy little boy who loves to "read" books
and play outside. He is our miracle baby and we will
be forever grateful to God and to Dr. Kays for saving
Never give up hope…no
mater how grim the circumstance may seem. God works
miracles every single day. It is such a privilege to
be Luke’s Mommy and I have been blessed to be
a witness to what God can do.
Update - June 2004
Luke is 3 and 1⁄2 years old and a VERY BUSY little
boy! He loves to play outside on his swing set and ride
his tricycle. He has been amazingly healthy and will
attend preschool this fall. We saw Dr. Kays in January
for a check-up and he was thrilled with Luke's progress.
He has developed a small hiatal hernia which Dr. Kays
will repair in January 2005. Luke continues to have
an expressive speech delay and is receiving speech therapy
weekly. He is making progress though and we are confident
that the Lord will give him lots of words soon! Each
morning when Luke wakes us up we thank God all over
again for the miracle that he is and for the blessing
of being his parents!
to Congenital Diaphragmatic Hernia 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.