CDH baby under the watchful
eye of Dr. David Kays
& Darin Toney):
God uses medical intervention for healing. Sometimes He heals without
any medical explanation at all. Sometimes He does both. This is a miracle
story in which God used both medical intervention and supernatural power
to bring about a healing in my son, Caleb Michael Toney. After battling
with infertility for more than six years, we learned that all the tests,
procedures and surgeries had paid off. God had allowed us to be pregnant
with not only one baby, but two babies. Every doctors visit showed
two healthy appearing babies on ultrasound. I started having signs of
preterm labor at 29 weeks. As a result of the preterm labor, I was put
on bed rest to keep the babies inutero as long as possible.
30 weeks gestation, I was at a routine doctor visit when my doctor thought
he saw something out of place on ultrasound. After a lot of silence, he
explained that he thought he saw Baby Bs stomach near his heart.
He mentioned the term diaphragmatic hernia, and gave a quick explanation
and sketch on the examination table paper. He did not cause me to panic,
but told me that he wanted another ultrasound performed at Shands. My
first clue that this was a very serious condition was the fact that my obstetricians
nurse made the appointment for the next working day.
At our appointment
at Shands, the doctor was even more quiet than my doctor had been during
the ultrasound. After my examination he took us in a room and drew a sketch
saying, This is what a normal baby has in its chest and this is
what your son has in his chest. Our baby boy was diagnosed with
a diaphragmatic hernia. An opening in his diaphragm had caused his intestines,
stomach, kidney, and spleen to migrate into his chest cavity. These organs
in the wrong place shifted the heart towards the right and hindered the
left lung development. The magnitude of the diagnosis began to sink in
our minds. As humans do, we immediately asked God why He would allow this
to happen especially with our situation. We waited so long to hear the
words, youre pregnant and now to hear the words, your
son could die tore our insides out. We trusted God but fear gripped
our spirit and the next eight weeks of the pregnancy was a battle in and
of my pregnancy seemed like an eternity. We spent it learning what we
could about the birth defect and preparing ourselves physically, mentally,
and most importantly spiritually. In a short amount of time we learned
what we could about the life threatening birth defect. One thing we
learned is that just a few years ago this diagnosis would have meant certain
death for our baby. We also learned that Pediatric Surgeon Dr.David Kays
at Shands Teaching Hospital had the highest survival rate in the country
for a diaphragmatic hernia repair. Our first introduction to Dr. Kays
was while I was in triage having my contractions monitored. (My contractions
had Darin and I making many runs to the hospital on a weekly basis.) Here
I was in a house dress and flip flops looking like that typical barefoot
and pregnant image and Dr. Kays wanted to take us on a NICU tour
and teach us all about his therapy for CDH in a conference room with another
expectant couple who had flown in from Chicago. After the medication kicked
in and my contractions got under control, we made a day of it. There was
so much information that my mind could not even begin to comprehend what
our precious son would have to go through. I did know this, Dr. Kays
passion, intelligence, and approach was exactly what our baby would need
to have a chance at life. Although I was sad that my obstetrician could
not deliver my babies, we felt extremely blessed to live near the best
hospital for our baby. Many parents with a diaphragmatic hernia baby come
from all over the country for treatment at Shands. The Lord already had that part worked
out for us.
Besides learning about our situation, we immediately began praying and
asked everyone we knew to pray. During the next eight weeks while still
on bed rest, we received much encouragement from others who were filled
with faith for our sons healing. A close friend had put the healing
verses we were praying on little pray cards so that we could put the scripture all
around his bed while in the hospital. When fear would grip my spirit,
all I could do was read Gods word. Verses like John 11:4, This
sickness is not unto death, but for the glory of God that the Son of God
might be glorified by it. and Psalm 118:17, He shall not die, but live to tell
of the works of the Lord. I also made an audio tape of me singing
encouraging songs and of Darin and I reading the healing verses so that
Caleb could hear our voices while recovering. We thought we were ready.
We believed Caleb would be healed, but had no idea how far our faith would
On October 18, 2000 the time finally came to deliver the twins. Fourteen
hours after I was admitted, with more than 20 medical professionals present,
Cara Marie was born at 4:40 AM. She was a beautiful, healthy baby girl.
It was such a relief to hold her in our arms. We had such mixed emotions.
I was overjoyed and terrified at the same time. How was I going to go
through another birth? My body had to prepare itself all over again for
the birth of Baby B. I thought twins were supposed to pop out one right
after the other. I learned that that did not always happen. I feared that
I would need a c-section with Caleb and then have to recover both ways.
As they wheeled me back to my room to wait for the next birth, I heard
someone say that Dr. Kays had found a chair to sleep in while he and his
team waited for Calebs birth. The labor was a totally different
experience now and the epidural was not working like it had with the previous
labor. Five long hours later, Caleb Michael was born. With barely a glance
at him, the doctors and nurses took him away to be ventilated and assessed.
His faint, weak cry as he came into this world still lingers in my mind.
After Dr. Kays had intubated Caleb, he brought him over for us to see
him. He looked so good on the outside it was hard to believe he was so
sick on the inside. Darin and I just held hands and wept. We knew it would
be the hardest experience of our life.
Caleb did well initially, but started to have problems within the first
24 hours. It was chilling to get a phone call or visit by the doctor in
the early hours of the morning. He explained that Caleb had crashed and
needed to be put on nitric oxide to buy a little time before the operation.
Dr. Kays had to do the repair surgery the very next day. Something Dr.
Kays had said on many occasions prior to Calebs surgery was that
ultrasound gives some indication how severe the hernia is, but no one
really knows the extent of the hernia until the surgery is actually performed.
In Calebs case, he was much sicker than anyone had anticipated. During surgery the doctor
had to put the stomach, intestines, kidney and spleen back in the abdomen
and patch the hole in the diaphragm. Hopes were that the left lung would
develop now that it had room to grow. Before surgery Caleb was described
as a moderate CDH but now he was described as a severe CDH. Caleb required
extracorporeal membrane oxygenation (ECMO) to keep oxygen in his blood.
His heart and lungs could not do the job. The entire run on ECMO was a
struggle. Dr. Kays stayed many a night by Calebs side thinking,
watching, and adjusting his care accordingly. While on ECMO, Caleb had
many near death episodes. For some unknown reason, Caleb had problems
with cardiac output
and severe pulmonary hypertension. I can remember making my way to the
back corner of the NICU, knowing my baby was the sickest baby there. I
would stand there and watch this baby that I knew God had given me, but
I could not hold him and I did not even know if he would live.
These days were so trying. I was recovering from giving birth to twins
and trying to breast feed Cara and pump for Calebs future feedings.
Three days after the birth, Cara and I were to be discharged later that
day when we got an unexpected visit from Dr. Kays. He came to us with
more bad news. A bleed in Calebs brain was detected through a daily
ultrasound that is performed on ECMO babies. We knew this could be a side
effect of ECMO but we were praying that it wouldnt be. He asked
us if we wanted to turn off the life support because our baby would have
some degree of brain damage. I saw the hopes and dreams Darin had for
our son vanish from his face with the
heavy words of the doctor. Turning off the machines would have allowed
Caleb to pass away. Darin was silent so I jumped in and said, NO!
We will wait and see what tomorrow shows. When you have a mate that
God designed just for you, you see some amazing things when you go through
a tragedy. When one of you is too weak to talk or think, the other will
be strong. I saw this time and time again with our marriage. It was usually
Darin being the strong one, but this time I had to be the one. Dr. Kays
was glad that we had not given up because he had not given up yet either.
Again the phone lines were busy spreading the word for believers to pray.
We could not bear the thought of going home and we longed to be as close
as possible to Caleb. Again God worked it all out. Another couple who
had been through the same thing and had lost their baby to this same birth
defect, paid for us to stay in Gainesville for seven days. We left the
hospital and basically moved in to the Residence Inn. Soon word spread
and we had more people praying and donating days for us to stay close.
People who we did not even know were giving. All in all we stayed there
for a month without paying for one night on our own. Here we were: Darin,
Cara and me. Even though our heart would break for Caleb, we were so thankful
to have our little girl. Im not even sure how we took care of her
during this time, but God gave us what we needed to do the job. It definitely
helped to be able to hold her in our arms. But oh how we longed to hold
our son too. Darin was able to stay off work and be by Calebs side
through it all. He would spend 10-12 hours everyday in the NICU. Cara
and I would come and go as much as we could. Darin and I would often read
the healing verses out loud to Caleb. The Word brought us hope in the
middle of despair.
We finally received the first good news about Caleb. Within three days
of the brain bleed, it was no longer detectable. God had to be the reason!
As we rejoiced, we got another set back. The doctor wanted to do an exploratory
surgery to see why his cardiac output and perfusion were doing so
poorly. Our emotions were on a roller coaster. The surgery showed that
everything should have been working but since it wasnt, the ECMO
had to be converted to venoarterial. Now the ECMO machine was connected
directly to one of Calebs carotid arteries.
Caleb finally started to slightly improve on VA ECMO. No matter how slight
his progress was, we were thankful and praised God. The entire timewhile
on ECMO (21 days) it was a rocky course. Due to the blood thinner reduction
after the brain bleed, Caleb had a continuous problem with blood
clotting. The ECMO circuit had to be changed out every couple of days.
This circuit change would set him back. It seemed like we would take one
step forward and two steps backward. His perfusion difficulties caused
the circulation in his toes to stop and he would eventually lose portions
of every toe. We did not care, we just wanted our son to be well even
if he had no toes. Caleb also had to have a right and left chest tube
to help drain excess fluid from his chest. He finally was able to come
off of ECMO and a week later he came off the ventilator. Caleb was now
almost a month old.
With the repair surgery, exploratory surgery, ECMO procedures, and chest
tubes, Caleb had a total of seven surgical procedures. He was going to
make it! We could now hold him for the first time. It felt so wonderful
to feel his warm, live little body next to me.
The rest of Calebs recovery was remarkably fast. Most of these babies
have feeding issues and reflux problems but Caleb had neither. He took
his feedings by mouth and to everyones amazement breast fed like
a pro. Before discharge a CT scan showed a normal looking brain. What
a miracle! Besides some liver levels being high, his toes in the process
of falling off, and him
being on oxygen, we prepared to take our toeless wonder boy
home. Still anxious about the toes falling off, Dr. Kays shared some words
of wisdom. He said, Dont worry about them. Just let Caleb
put them under his pillow and see if the Toe Fairy will come. We
just had to laugh or we would have been crying. The toe situation was
not as bad as it sounds. Amazingly enough, when the toe would auto-amputate,
underneath would be a pink, healed little toe nub. On December 6, 2000,
we took our son home, fifty days after his birth. We were now a complete
family. God did hear and answer our prayers. All in all Caleb is developing
great. He and his sister bring such unspeakable joy to our lives. Caleb
and Cara are a living testimony of medical and supernatural miracles.
God is still providing abundantly. Darin was off of work for two months
and the medical bills were many, but God has provided a miracle financially
as well. All bills are taken care of and we give God the glory for that
In closing, through Calebs diagnosis of a diaphragmatic hernia,
delivery, repair surgery, multiple surgical procedures, ECMO for 21 days,
ventilation for 28 days, parts of all 10 toes gone, and 5 months of oxygen...God
was faithful. Dr. Kays admits in writing, Physical examination reveals
an amazingly well appearing boy... He had a very difficult course and
his survival hung in the balance for quite a while...He is developing
well, eating well and really is a miracle baby...
Update on Caleb, June 2004
I am truly amazed every day how healthy and full Caleb's life is. He is now three years, 8 months old. He has been remarkably healthy with only a virus here and there. His visits to Dr. Kays have so far revealed the gortex patch still in place and an awesome looking left and right lung. Besides the many scars, pectus, and his little nubby toes, Caleb shows no signs of ever being sick. His health is outstanding!
Caleb's development never ceases to amaze us as well. Even though we were told some deficit would appear at some point due to the bleed in his brain while on ECMO, we have seen no sign of any delays. He crawled, walked and talked on time and continues to meet age appropriate milestones. He has the most incredible sense of humor of a three year old I've ever seen!
Caleb loves to ride his bike, sing loudly, and play with his Thomas the tank engine trains. He and his twin sister keep us on our toes. This fall they are going to preschool for the first time. They are ready but I'm not sure Mommy is! Thanks to God and Dr. Kays, it is a sweet life and we appreciate every minute.
Elizabeth Toney-May firstname.lastname@example.org
Romans 8:28- And we know that all things work together for good
to them that love God, to them who are the called according to His
Are you a parent carrying a child with CDH? Click here to
contact Dr. Kays and his staff