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
Dakota Tenney (Jennifer Tenney):
Dakota's
Story
I was 29 weeks pregnant, and everything was going perfectly, when at a routine
ultrasound I first heard the words "Congenital Diaphragmatic Hernia." I went
home and began to research it on the internet. The first thing I found was the
nationwide 50% survival rate, then I found blog after blog of CDH angels, and I
began to sob. Finally, after searching for about an hour, I clicked on Real
Hope for CDH's website, and saw that there was a surgeon with a 92% survival
rate in Gainesville, Florida! My tears dried ... I had a plan ... I had
hope. I met Dr. Kays and he was so knowledgable, confident and dedicated ... I
knew I had come to the right place. However, I live 5 hours south of
Gainesville, so the plan was to relocate in Gainesville at week 36. Well,
Dakota had a different plan and arrived at my local hospital, unexpectedly on
Christmas Day ... over 7 weeks early!!!!!! I frantically explained to any nurse
or doctor who would listen that she was going to be born with CDH, that she
wouldn't be able to breath, that she would need to be intubated, and then she
needed to go to Dr. Kays in Gainesville, Florida. Dakota arrived 40 minutes
after I got to the hospital. Right after her birth, the doctor called Dr. Kays
office, and even though it was Christmas Day and he was supposed to be leaving
for vacation, he sent Shands Air to come pick Dakota up. I remember watching
her little hand curl around my finger as I told her goodbye ... but I
knew she was going to the right place and I would see her soon. She arrived
safely and had a good first night. 
But on her second day, Dakota began to crash. Dr. Kays postponed his vacation
and put her on ECMO. She was supposed to be on ECMO for approximately 10 days.
However, on her 2nd full day on ECMO, due to her premie size, the cannula in her
neck shifted and kinked so that the machine couldn't flow like at the rate Dr.
Kays had ordered. But as the nurses watched, she maintained steady in all her
numbers and blood gasses at the decreased flow. So they began to wean her off
ECMO, and she was off by the 3rd day. I was so proud of my overachiever.
From then on, Dakota remained stabile. She had surgery on her 13th day of
life. She was on CPAP about a week after that, and then 2 weeks after that was
on nasal cannula oxygen. I got to bring my baby home on her 2nd month birthday
on oxygen, but without any feeding tube. I am so very grateful for Dr. Kays and
the Shands staff. They gave my baby, born at less than 33 weeks, a chance when
many other hospitals wouldn't have. The care, dedication and skill practiced at
Shands is amazing and I will always look back at the place where we spent
Dakota's first two months of life with love and fond memories. Dakota is an
adorable, happy, tiny, but perfect 18 month old today. She is my Christmas gift
and I am never giving her back.
Jennifer Tenney
jennifertrafton@hotmail.com
Are you a parent carrying a child with CDH? Click here to
contact Dr. Kays and his staff