Tiger and Storm Hall
This is a personal story shared by a family whose child has Very-Long-Chain
Acyl-CoA Dehydrogenase Deficiency (VLCAD).
Storm
Tyler, was born on September 23, 1996. He
was 7 pounds 9 ounces and 21 1/2 inches, with an APGAR of 8 & 9.
He had a head full of hair and looked like a little man.
I stayed the required 24 hours and a few hours after coming home from the
hospital he suddenly stopped breathing. In
spite of my CPR and the EMT's efforts Storm was pronounced dead on our living
room floor. I lay there with him
for two hours while the officials did their crime scene scenario.
Photos taken of his unused crib and nursery.
Finally, we were given just 5 minutes to hold him and say goodbye before
our son was taken away into the night. We
buried him in his coming home outfit in the cemetery's Babyland.
Tragically for us, his cause of death was misdiagnosed as "coarctation
of the aorta".
Three
years later we tried again. During pregnancy we had this baby's heart tested
by ultrasound, everything was normal. Our
second son, Tiger Jordan, was born May 27, 1999. He was 8 pounds 1 ounce and 21 3/4 inches, also with an APGAR
of 8 & 9. Tiger had these huge
"paws"! He was such a big boy,
you could tell he loved to stretch and arch his back. We requested his heart be re-tested by a pediatric
cardiologist for peace of mind. The
results we normal yet five hours later while still in the hospital he was
pronounced dead. I remember looking at him in PICU, and seeing his little chest
rising and falling. I looked at my
husband and said, "Wait! He's still breathing." The nurse said the
ventilator was breathing for him. It
was too, too much for me, and Klint literally caught me as I fell backward. We buried him next to his brother.
We
were told that our sons' deaths were clearly not related since Tiger's heart
had no defect. Tiger's cause of death was "unknown". But I was convinced after watching them both die that the
signs were identical including them both living just 28 hours.
The
Pediatric Cardiologist thought it sounded metabolic when we met with him days
after Tiger's death. He gave us
key words to help with my search. I was spending hours on the web looking in
medical journals for similar signs and symptoms. Just one week after Tiger's death, I found VLCAD, Very Long
Chain Acyl-CoA Dehydrogenase Deficiency. Call
it luck or call it mother's intuition, but I was sure I was onto something! I
faxed every Dr. in NM with the medical journal article and my request to look
into this disorder. All responses
were that Tiger did not fit the profile for metabolic disorders.
Months went by while they exhausted every other avenue before FINALLY
screening for metabolic.
After
the results came back as VLCAD for Tiger, I went down to the Office of Medical
Investigators and had Storm's post-mortem blood spot sent for analysis.
The test confirmed what I already knew; he too had died from VLCAD.
Storm
would now be turning four this month on the 23rd.
And Tiger would be a little over a year.
The nursery still intact, clothes still in drawers. I still need a
place in my home for my boys.
The
Tyler
for Life Foundation (now Save Babies Through Screening) has been the greatest opportunity for me to help save others from the
pain we have suffered. I can't
thank Tera enough for her strength in starting the foundation and giving me the
opportunity to use the vehicle she created to be able to make a difference.
Thank
you for letting me share my story. Please
feel free to contact me at any time.
Sincerely,
Kileen Hall
Written September 2000 by Kileen
Hall
Mom to Storm & Tiger
New Mexico
Please
see the pdf pamphlet on Getting
Answers about your Child's Death
Written by Kileen Hall.
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