Real Hope for CDH
Affectionately known as "KAYS' KIDS"
Learn about a 92%
survival rate for CDH babies born here at Shands
Learn about a 92%
survival rate for CDH babies born here at Shands
Dr. Kays' Team Has a 92% Survival Rate for CDH babies born at Shands
CDH baby under the watchful
eye of Dr. David Kays
Delancey Hastings (Teresa Hastings):
“It would be best to terminate”, “You’re young”, “You’ll have more babies”,
“Your baby will most likely be stillborn or die soon after”. These were
statements made to me the first week I found out about my daughter’s birth
defect – Congenital Diaphragmatic Hernia, or CDH. Devastated and overwhelmed by
the diagnosis of my unborn child, I left the office and stayed in bed all day
and wept. After wallowing in my grief for what I thought would be the death of
my child, I realized I couldn’t give up yet based on a few doctors advice. Just
by chance, or I like think godly intervention, a friend gave me a number of
another local family who had a child who survived the defect. The Bunch family
had a son who had not only survived, but was thriving. Judy informed me that
there was a brilliant doctor at Shands Hospital in Gainesville, Florida that had
saved her son’s life by using a little known technique called gentle
ventilation. Dr. David Kays was his name, and he had a 92% success rate for
babies born at the hospital. This was a person I had to meet! During this time I
also was doing an intensive study of this defect and found the Cherubs site.
There was information on their site about in-utero surgery being done in San
Francisco with a 30% success rate. Surprisingly, I could not find any
information on the gentle ventilation method used by Dr. Kays. Not wanting to
leave any stone unturned, and knowing statistics can be misleading, I visited
both doctors and decided without a doubt that Gainesville was where our daughter
would be born.
Our first visit with Dr. Kays lasted three hours. We were encouraged with his
knowledge and technique used for CDH, but most impressing was his passion for
these children afflicted with this defect. I have never met a doctor who gives
so much of himself to his patients. I knew I had made the right decision to
place my daughter’s life in his hands.
With 27 people in attendance, Delancey was born by C-section on June 4, 1999.
She weighed 7 pounds, 6 ounces and had an initial Apgar score of 4 that
increased to 8 after ten minutes. I, of course, knew none of that at the time,
only that my baby never made a sound upon birth. Being the doctor he is, Dr.
Kays whisked her to my face so I could give her a hurried kiss. I tried to
memorize the details of her cherub-like face during those brief seconds, As they
closed my incision, I could barley see the team working diligently on my
daughter. Observing their faces, no one seemed overly panicked, but earnest at
what they must do to save her life. Dr. Kays informed me she was intubated and
on her way to NICU. As a mother, that was such a painful and heartbreaking
moment. I so desperately wanted to caress and cuddle the child that needed so
much care, but I couldn’t. Soon afterwards I began to have an allergic reaction
to some medication thus prolonging my visits to my daughter. When I finally was
wheeled down to see her, I had to fight back the tears and try to get in control
of my overwhelming emotions. Delancey was on ventilator support with what seemed
to be a million tubes coming from her. Dr. Kays informed me her left sided
herniation had bowel, spleen, stomach, and a tip of her liver in her chest
cavity. As to be expected, her lungs were underdeveloped. He informed us the
first hours were the honeymoon phase, then he would determine what was to be
done next. She soon began to crash, oxygen rates were dropping, so he decided to
do her repair surgery the next day. When I saw Dr. Kays walk in my room, I knew
all was about to change. He informed us that Delancey needed to be placed on
ECMO, a life support machine, in order to keep her alive. This was the moment I
had feared, yet knew would probably come. I remained calm until he left, then
completely fell apart. The next ten days of ECMO were horrific. The ECMO machine
had so many possible side effects – hearing loss, brain damage, and stroke – but
at the same time it was saving her life. Delancey had two episodes of rapid
heart rate, SVT, but successfully came off the machine without any harm done.
Our next hurdle was getting her off the vent, but had moderate reflux thus
causing her to have another surgery. The GT placement and Nissen were done
without complications. Dr. Kays informed us as long as she tolerated feedings
and gained weight we would be going home in a few weeks. Delancey did experience
some retching when the volume increased, but she did maintain and gain weight
adequately enough to go home.
We
went home two months after arriving at Shands on 100cc of oxygen and with
Cisapride, Lasix, Metoclopramide and Creon to be taken daily.
Delancey is now five years old and doing incredibly well. Our family thanks God
for sending us Dr. Kays and his skilled staff. Dr. Kays says much of what he has
gained about CDH was being in the right place at the right time. I feel it is
all of us who were in the right place at the right time to have our children
treated by such a gifted, passionate doctor
Are you a parent carrying a child with CDH? Click here to
contact Dr. Kays and his staff