Spencer Kult
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Spencer Christian Kult was born on a very cold January
morning in St. Louis, but it wasn't until 5 weeks later
that his parents, Chris and Tina, were told of his complex
heart defect. Spencer's pediatrician heard a loud murmur
during his routine 4-week exam and referred the Kults for
an echocardiogram (ECHO). The information from the echo
would change the Kult's lives forever.
Spencer was whisked away to the pediatric intensive care
unit (PICU) to be given oxygen and to start an IV.
His oxygen saturations (SATs) were in the low 70s (normal
is 95 to 100).
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Spencer had the most beautiful olive skin.
But when it was combined with jaundice his first few weeks, his
skin tone masked another clear indicator of CHD: duskiness. Spencer
was stabilized and readied for transport to Cardinal Glennon Children's
Hospital. Chris and Tina were informed that Spencer had a very complex
heart defect that included only one ventricle. He would need to
have possibly 3 heart surgeries to help his heart.
Within 24-hours of arriving at Cardinal Glennon,
Spencer underwent a heart catheterization to determine his exact
anatomy and also have a procedure called a blade septostomy. The
doctor cut Spencer's atrial septum with a blade through a catheter
in his femoral vein. By enlarging a hole between his atria, Spencer's
SATs went from the low 70s into the 80s and then climbed as high
as 93. Spencer started lasix and digoxin and he was released within
5 days.
Chris, Tina, and Spencer went to Cardinal Glennon's
cardiology clinic every month to check his progress and adjust his
medicines when he gained weight. It took 9 months before Spencer
started experiencing shortness of breath that determined it was
time for his first surgery. He had a second catheterization on his
first birthday. The hemi-Fontan followed six weeks later on March
16, 1998. The Kults were home in a week.
Spencer thrived for the next two years and
grew into a precocious toddler. During that time, Tina started attending
a local support group at St. Louis Children's Hospital and participated
regularly on PDHeart. In October 1999, she wrote a letter to Missouri's
governor requesting a proclamation for 'A Day for Hearts: Congenital
Heart Defect Awareness Day.' Spencer presented the framed proclamation
to the Cardinal Glennon cardiology staff in February 2000 while
preparing for an unexpected surgery.
Spencer's Extra-Cardiac Fontan was performed
on March 6, 2001. He was extubated the next day, and it looked like
Spencer was on his typical path to recovery. However, he suffered
a stroke the 4th morning post-op. Fortunately, Spencer
recovered very quickly and there was no permanent damage. Once he
was transferred to the floor, the effusions kicked in. The final
chest tube came out 3 weeks post-op. Spencer's hospital stay was
24 days with a follow up appointment scheduled just 3 days later.
Spencer's effusion was worse and he was admitted
during the follow up. The Kults waited a week while Spencer's INR
slowly went back down into an acceptable range before the surgeon
could 'tap' the fluid from Spencer's lung. During the procedure,
Spencer's intercostal artery was nicked. He was rushed back to PICU,
where he was given a chest tube and blood. Spencer had surgery the
next morning to stitch the artery. He spent 2-1/2 more weeks battling
the effusion. He finally went home at the end of April.
The summer flew by, but the effusion reappeared.
Spencer was admitted again in October. Two weeks stretched into
4, and 4 stretched into 7. Spencer went home the weekend before
Thanksgiving on daily antibiotic treatments for an infection. The
effusion was still hanging around, but not as bad as it was in October.
After Thanksgiving, Spencer needed to be readmitted
because of horrible abdominal pain. The restrictive chylothorax
diets of nothing by mouth, no fat or very low fat had inflamed his
gallbladder and pancreatic duct. His gall bladder was removed and
Spencer spent two more weeks in the hospital.
Spencer cruised through the winter. His diet
changed at each appointment depending upon his chest x-ray. Then
he became very ill at the end of a vacation. His lingering effusion
coupled with a reaction to a different medicine sent him into severe
respiratory distress. He was better after a night in the hospital,
but as long as he was admitted the doctor wanted to 'tap' the effusion
again. Spencer spent 5 days in the hospital and returned the next
week for a cath.
Spencer's fenestration had closed too early
and the doctors all felt that redoing his fenestration would help
the effusions. However, his AV valve was leaking again. They felt
that the increased blood flow from the new fenestration might cause
his valve to leak even more. Spencer was scheduled for another open-heart
surgery on May 15. His surgery took longer than expected. The effusion
had created extensive scar tissue and it took 3 hours to chip through
the tissue. To repair the valve, it was necessary to stop his heart
again. At first everything went well, but his heart rate sped up
when attempting to take him off by-pass. The surgery proved to be
a bit much for Spencer's stressed heart. He came out of the OR on
ECMO.
Spencer experienced several arrhythmia episodes
and could not hold his own when attempting to wean him off ECMO.
The Kults decided to list Spencer for a heart transplant.
Spencer received his new heart on May 28, 2002.
His chest remained open until June 5. Slowly Spencer was getting
stronger and more alert, but his kidneys had failed to start working
again after his transplant. Spencer went back to the OR on June
19 and had a dialysis catheter placed in his pelvis. There was talk
of extubating Spencer until on June 26 when he experienced a life-threatening
GI bleed. Spencer was again put under sedation and medically paralyzed.
He was allowed to wake up again around the 4th of July.
Even though Spencer's strength was slowly coming
back, he continued battling the ventilator and the dialysis was
slowly failing. On August 3, 2002, Spencer was accidentally extubated
and he did not rally back as quickly as he had the week before.
His blood pressure was too low and the dialysis was in crisis. By
the afternoon he was asking for Popsicles again.
Chris and Tina had told Spencer that when he
had the breathing tube he would not be able to talk. Therefore,
Chris taught Spencer to give a 'thumbs up' sign when things were
going okay, but a 'thumbs down' when they weren't. They also did
the sign for 'I love you.' For 2-1/2 months, Chris received the
'thumbs up' sign whenever Spencer was conscious. Sunday, August
4th was the first time Spencer gave Chris the 'thumbs
down' sign. Spencer's blood pressure was steadily drifting down.
Any medicine they could give to raise his blood pressure would compromise
the blood flow throughout his body. With dialysis failing, it was
just a matter of time before all his other organs would start failing
as well.
Phone calls from around the country were received
in room 2916 that afternoon. Spencer listened as his grandparents
and all his aunts and uncles said good-bye. Chris and Tina told
him that he would soon be going to be with his other heart friends
and Jesus. Spencer nodded his head in understanding and told Chris
and Tina through a series of nods and hand squeezes which toys he
would like to take with him to Heaven. Then he gave them the sign
for 'I love you,' smiled, and closed his eyes.
Return to Spencer's Fund
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