A message from the Ingerson Family dated September 10, 2000
To all our family and friends,
Thank you very much for the love and support you've offered my son during his three and a
half years. As our lives have been enriched by having this special child in our family, so
our lives have been enriched by your friendship and love.
You may be interested in reading the kind words below poignantly phrased by the pastor of
our former Metro East Christian Fellowship. To provide a picture of what occurred this
Today, after a lovely time of worship and preaching with our new church home we enjoyed a
church-wide picnic. Our new local church home is Cornerstone Assembly of God, Bowie
Maryland, a church which took a difficult stand for our son in that they chose to invite
us to enjoy full fellowship in the faceof a family who threatened to leave the church if
they allowed our HIV positive son to remain in the 3 year old Sunday School class. During
the picnic the Cornerstone worship team led us in several worship songs during which time
the children were invited to come stand and "lead" us in worship at the front.
As soon as Caleb noticed what his sisters had gone to do, he insisted on accompanying them
to the front. Precious in our mind's eye will be the memory of seeing him standing with
the other children in heavenly worship less than an hour before he left the earth for his
Less than an hour later, after playing on the playground equipment and watching the
children play kickball, I was holding Caleb in my arms talking when he suddenly he reared
back until his head was at my knees. While pulling him back up to me I surprisedly asked,
"What are you doing fella?"When I saw his eyes, incredulity only kept me from
immediately realizing he was dead. We suspect he experienced something like a sudden
electrical arrymthia which caused his heart to go into immediate arrest.
Kathy and two others nearby began CPR to no avail. Despite two electric cardiac
resuscitation attempts by the hospital staff at a local clinic ER, he never regained
It's bittersweet to know he died of heart failure in my arms..........and was immediately
translated into the Savior's.....the arms of the Savior who's heart burst for him on the
To all our loving family in Christ, we say, "Rejoice in the Lord; and again I say
Grace to you in Jesus,
Pastor Rich's words:
In a message dated 9/10/00 9:59:28 PM Eastern Daylight Time,
Subj: Re: Caleb Ingerson: March 4, 1997 - September 10, 2000
Date: 9/10/00 11:47:14 PM Eastern Daylight Time
"Precious in the sight of the Lord is the death of His saints."
Caleb, the Fighter, has finished his final battle. Early this evening at his home just
outside Washington, D.C., Caleb Ingerson bravely faced the final enemy. He suffered what
was apparently a massive heart attack at dinner time. His body went limp and his ferocious
heart just stopped beating. There are scant details, but he was rushed to the hospital
asmany of us here prayed for his brain not to be injured from oxygen deprivation.
We rejoice in the sure hope that this young warrior left this world of difficulty and
entered into the sweet shalom and fellowship of the Lord.
It was Caleb of old who silenced the unbelieving Israelites when he said, "We should
go up and take possession of the land, for we can certainly do it." Young Caleb has
now gone up and taken possession of the land the Lord Jesushas prepared for him.
We sensitively grieve with Kathy and David and the childrenalthough not as those who
have no hope. We also rejoice that Caleb faces no more doctors and hospitals, shots and
shunts, purple lips and GI tubes. No longer does this precious child struggle against the
congenital complications he so courageously contended with, nor will he need to face the
grim future that the Virus would have brought him.
No more fighting for the fighterno more tears or sorrow or pain or death. Only the
beautiful release of going home to the One who loves him even more than his family or
myriad masses of admirers. Now he knows more than any of us who remain, and in his
now-perfect mind and heart he celebrates the joy of the Lord for eternity.
Our hearts and our love go out to you, David and Kathy, Sarah, Andrew and Hannah Joy. You
all served this child of God faithfully. He never lacked love, care and spiritual
covering. May the Lord bless and keep you. Your friends at MECF.
for all the flock.
We are accepting memorial donations. Make checks payable to Open Gates
International, 1124 Broad Street, Collinsville, IL 62234, and designate it "Caleb
Memorial". Donations will be equally distributed between the Congenital Heart Disease
Research Program at the Pediatric Cardiology Department of the University of Michigan
Medical Center and the Jesus House of Prayer in Jericho, Israel. Open Gates International
is a humanitarian, 501C, not-for-profit organization recognized by the IRS.
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Update: Sunday, May 14 2000
HALLELUJAH! The Lord God Omnipotent Reigneth! We give thanks to God for his loving
kindness that endures forever. Praise God for He fought the battle for us! (the surgeon
did NOT have to cut on Caleb's heart muscle; the troublesome heptic vein was ligated
beneath/outside the heart). As God fought the battle for Jehoshaphat, destroying Judah's
enemies; so God fought the battle for Caleb. Contrarty to the ominous expectations the
medical staff gave us, Thursday's surgical procedure was not only successful, but MUCH
simpler than anticipated! Praise God! Thank you Jesus. Thank you to all who prayed. Pray
also that MANY souls will be saved through the witness of this little child.
Caleb was taken off the respirator within four hours of surgery (a first for him). Much to
his surprise, the surgeon was able to accomplish the objective without placing the child
on the HEART-LUNG-BYPASS machine. The doctors were as absolutely amazed as we were!
Praise God and thanks again for praying. Surely our God loves us and answers prayer! May
we all seek to pray to him daily for all our needs; especially our deep need of salvation
in Him through Jesus Christ our Lord.
Again, thanks to all who are praying. May God richly bless you.
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Update: Thursday, April 6 2000
We now have a date for Caleb's fifth open-heart surgery, May 11th. Bless you for
praying for our little Fighter! May God be exalted by everything that is done through this
little boy. Continue to seek Jesus Christ our Lord and Savior.
God has led me to share the testimony of my son's victory over congenital heart failure
as I've preached the gospel to the precious people of the Philippines (from April 2nd
through the 14th). I've found them very concerned and touched by Caleb's story! Praise God
for His mighty power as He glorifies Himself through the life of this little child.
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Update: Saturday, March 31 2000
Caleb has been quite blue since his last heart surgery. Today we found out why. It
seems he has a vein attached to his heart which is spilling blood to the wrong side of the
heart, consequently this blood is not being oxygenated. This is because the blood going to
his heart from this vein goes directly to his ventricle (pumping chamber) and gets pumped
back to his body, bypassing his lungs. Thus, surgery is required to rectify this erroneous
circulation. We expect the operation to be scheduled the second week of May.
Regarding Caleb's HIV infection, his latest CD-4 (lymphocyte) count is 230, down from a
high of 495. While this is not cause for alarm, it is not indicative of the ever
"elusive" positive trend; however, we thank God the precious child has not
experienced any subsequent "opportunistic" infections. Join us in praying he'll
remains free of such infections until this next heart surgery in May.
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Update: Saturday, February 12th, 2000
Last week we took Caleb to see another specialist, a gastrointerologist. In response to
his query as to why we were there to see him, I responded, "We don't have your name
punched on our dance card." While he seemed only mildly entertained at my attempt to
humor him, he was quite gracious and offered us some insight we'd not learned from anyone
else. Consequently we've increased the child's daily caloric input by increasing the level
at which we "pump" formula into his stomache at night. We are also going to have
some GI tests conducted next week to help us try to rule out whether or not the repair
from one of his past surgeries, his Thal Fundoplication, may have become
"undone." All this investigation is because although Caleb has grown an inch
taller [he's almost 3 feet tall now!], he has not gained any weight in over six months. :(
Now for the really good news.....while in St. Louis at the Children's hospital, where the
gastrointerologist practices, we stopped in at Caleb's cardiologist to have his oxygen
saturations checked. As we suspected based on "parent observed" increased energy
level, his oxygen saturations are up approximately 5% from 65% to 70%! Praise God!
Medically speaking, while this may not seem like much, to go from bad to slightly less
bad, we feel it is like going from "not-so-good" to MUCH better. Praise God!
February 14th is the first annual National CHD Awareness Day! May the public gain a better
understanding of that fact that heart defects are the most common birth defect and number
one killer of babies. If even "minor" heart defects are included in the
statistic, it's estimated 1 in 100 are born with heart defects. Obviously, the
"risk" of a life-threatening heart defect such as Caleb's is must less
prevalent; however, it is still a greater problem than most people realize. May we join
forces and seek to better understand this serious issue and work to curb its impact on our
May the favor of the Lord Jesus Christ be upon you! Blessings. :)
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Update: Saturday, December 25th, 1999
Hallelujah Caleb's most recent blood tests [from Monday, Dec 13th] reveal a satisfying
undetectable viral (HIV) load. This means that the 72 hours off his antiretroviral
medications (HIV medicines) from just before, during, and after his most recent [November
2nd] heart surgery seems to have resulted in no ill effects. Praise God!
On the less than marvelous "front" the past six weeks have been VERY
challenging. The child has been quite uncomfortable. We suspect it's due to his mild
hypoxia (his oxygen level continues to hover around 65%). He's been complaining not only
that his "eyes hurt," but also that he's "tired!" I'm nearly tired of
hearing him exclaim, "I'm tired!" however, it's easy to be sympathetic when he
sounds so pathetic! Hey...that's sounded poetic. Or did it sound eccentric? Ah well...We
must keep our humour up don't you know?
Hallelujah, it's Christmas Day! Did you know there is more confirmatory historical data
indicating the birth and crucifixion death of Christ Jesus than any other historical event
of that time? It is a well documented fact that God's son took on human form being born of
a virgin. The miracle of His virgin birth lends credibility to the Biblical record which
clearly declares that He died to pay the penalty for our sins to purchase for us a place
in heaven which He offers as a free gift. Won't you accept the gift the child of CHRISTmas
is offering you? Eternal life. That's what He offers us. Check out my [Eternal life]
link above and have a blessed CHRISTmas and New Year!
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Update: Saturday, November 20th, 1999
While we are generally pleased with Caleb's progress since his most recent surgery (Nov
2nd), his blood-oxygen saturations (sats) continue to hover around 65%. [Note:
Approximately 100% sats are reasonable for a person with a normal heart.] Our goal for
Caleb is for his sats to reach the range of 80 to 85%. Due to Caleb's current demonstrated
lack of energy and mild irritability we decided to take him to see his local pediatric
We discussed with the doctor the possibility that Caleb's heart/circulatory system is
having a difficult time adjusting to the new routing of his blood. We suspect the
fenestration (an important release openning the surgeon placed) in Caleb's right atrial
"baffle" during his Nov 2nd surgery could be allowing more blood than expected
to "shunt" into his atrium from the inferior or superior vena cavas, hence not
traversing his lungs prior to being pumped back to the body. This results in some of his
blood being pumped back to his body before being oxygenated, hence reducing the
oxygen-rich blood available throughout his body.
If his oxygen sats don't improve within two weeks, we'll place him on oxygen while
sleeping at night....won't that be fun! He is NOT fond of having an oxygen cannula in his
Although we are troubled that he has been refluxing and vomiting more lately, we expect it
to be related to his traceoesophageal fistula versus heart.
Thanks again for praying for our little Fighter!
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Update: Tuesday, November 9th, 1999
Hallelujah! Thanks again to all those who are praying for our little Fighter, Caleb.
Amazingly, he was released from the hospital yesterday. Now we are "watching"
him at his maternal grandparents' home to be sure he is strong enough to endure the 500
mile drive home to O'Fallon, Illinois. Speaking of grandparents, we say a great big THANK
YOU to both Caleb's maternal and paternal grandparents. My mother, Joan, as well as
Kathy's parents, Donna and Gerald have been giving and giving and giving to my family
during not only this, but each of Caleb's hospitalizations. Thanks Mom. Thanks Mom and Dad
On Sunday evening, we accidentally nearly pulled one of Caleb's two chest drainage tubes
completely out of his chest. The evening On-call doctor came and pulled the tube the rest
of the way out and stitched the thoracic openning closed so no undesirable air would be
introduced into Caleb's chest. The doctor commented that the staff would likely have
pulled the chest tubes one day sooner except that they could not believe that Caleb had
only drained 14.5 ounces of fluid versus the normal two to three times that amount (which
he normally drains after open-heart surgery).
The next day, Monday, we not only pulled the remaining chest tube, but also weened the
child off supplemental oxygen and pulled his heart "pacer" wires. After he
received a "discharge" echocardiogram the surgical clinical nurse practitioner,
Louise, told me his tricuspid valve was not leaking at all! Praise God! That valve's
leakage has been quite troublesome; hence, for it to be not leaking is fantastic! She also
reminded me that Caleb's heart function is "not normal." "Not normal,"
she explained, "for anyone, Hypoplastic Left Heart Syndrome (HLHS) or not!" She
further explained that Caleb's abnormal heart function amazes the doctors in that
"incredibly" this child's unique [poor] heart function is "apparently"
sufficient for him. Once again, we give God glory and thanks for a child who's heart
continues to amaze us all, including the doctors!
Another exciting bit of news is that unlike prior to the surgery, Caleb's heart is not
able to be put into an arrythmatic condition when a doctor pulses it with a mild electric
charge. [Note, this information was obtained while conducting an electrical
"test" which was accomplished in accordance with a medical "study"
Caleb is enrolled in which should help surgeons understand how to better perform the
required surgical procedures for future HLHS patients.]
People often ask us what God is teaching us during these "trials" pertaining to
Caleb's medical needs. One lesson we are learning is that life is a gift from God. We
ought to cherish and appreciate it. Our lives are very fragile and temporary. As the
Psalmist wrote, "our lives are but a vapor." While we, and so many others, are
appropriately exerting so much time and energy trying to help our son extend his life, we
ought not to forget that in the grand scheme of things, whether 70, 80 or more years, life
is short. Therefore, it's all the more important to be mindful of things spiritual and
eternal. For, all men (and women) are destined to die and then face the judgment. Praise
God we needn't face that judgment alone. Christ Jesus came into the world to die to pay
the penalty for our sins. God did this because He loves us. Our prayer is that you are
experiencing His love and are trusting in Him alone for your eternal life. Jesus said,
"To know You, is to have eternal life." Knowing God is the key. May you not only
sense His love but also know Him unto life eternal.
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Update: Friday, November 5th, 1999
Thanks be to God and to all those who are praying for our little Fighter. Caleb came
through surgery on Tuesday with flying colors. We had a few bumps in the beginning as the
directed donated blood was no where to be found. We thought we were going to have to make
a choice between proceeding with the surgery without the blood or reschedule the surgery.
The blood was found in Detroit (an hour away) and sent ASAP via taxi. The blood arrived
just in time, as Caleb came off the heart/lung bypass machine; He was immediately
transfused with one unit of the blood.
Caleb's numbers looked good right after surgery. That is, the pressure in his heart was
good. The next day his atrial pressure was a little high as his heart was adjusting to the
new blood routing (Fontan circuit). He also had to have another chest tube put in to allow
air around the left lung to escape and to enhance fluid drainage.
He was extubated (taken off the breathing machine) on Wednesday morning; hence we were
able to restart his HIV medications Wednesday evening after being off just 72 hours. There
is a delicate balance between maintaining his heart care and HIV treatment. We look to God
to work out this balance. We are also praying that Caleb has little drainage from his
chest cavity via his chest tubes. [Some children remain in the hospital for up to a month
waiting for the drainage to subside.] Persistent drainage will put dangerous stress on
Caleb's immune system.
On Thursday Caleb was transferred from the Intensive Care to a "standard"
private room! Praise God! He continues to make marvelous progress. David had the blessed
opportunity to use his knowledge of Bosnian language and people with a 9 year old Bosnian
cardiac surgery patient who was flown here by Samaritan's Purse (Christian relief ministry
headed by Franklin Graham--Billy's son). Praise God for Sofet's fast recovery from surgery
performed by Dr. Mosca on Monday. He was released from the hospital on Thursday afternoon.
He smiled as widely at David's American accent speaking Bosnian as he did when they told
him he could go home!
During this hospitalization we've had many exciting opportunities to encourage and pray
with other families that are going through the initial stages of numbness and shock as
they deal with critically ill children. One couple, parents of a three day old born with
numerous congenital defects, wept mixed tears of sadness, release of anxiety, and joy as
we prayed together at the Ronald MacDonald House until 2 AM on Tuesday evening. Please
lift up in prayer Lucas, their little boy. God knows the details of his illnesses.
Thanks again for all your prayers. As always, may God be glorified by the life of this
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Update: Monday, November 1st, 1999
Today was a long but productive day. We had a good consultation with both the Caleb's
cardiologist and cardiothoracic surgeon. The indications from his cardiac cathederization
are to go ahead with the second attempt at the Fontan tomorrow (3rd open-heart surgical
treatment to replumb his circulatory system). We are asking for prayer not only for
success in the procedure, but also that none of the frightening complicaitons result from
the many risks involved with this procedure. Thanks to all for your love and prayer. To
God be the glory!!!
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Update: Saturday, October 30th, 1999
Hallelujah! Caleb continues to do well regarding his HIV status. His immune system in
on a continued slooooow upward trend. His CD4 count (T-cell lymphocyte which
"helps" neutralize "invaders") is now up to 428 (up from a low of 256,
and 395 last month; normal for a two year old is around 2,000).
In the lesser good news department: Caleb's viral load has crept back up to 543 from an
exceptional low of 41 [recall his high of 29,980]. While it is not a great concern, we
must confess we are disappointed in this number since we had been hoping/praying for a
continued "undetectable" viral load. Anything below 400 is considered
undetectable and triggers the "ultrasensitive" test to be done. It's
disappointing when the ultrasensitive test is unnecessary.
The most pertinent news we have to share is that we are departing our home in southern
Illinois, just east of St. Louis, Missouri in a couple hours to drive to the University of
Michigan Medical Center, C.S. Mott Children's Hospital. Caleb is scheduled for an
evaluatory cardiac cathederization on Monday, November 1st, with open-heart surgery
tentatively scheduled for the next day.
Join us praying that his heart condition warrants the inherent risk this surgery afords.
For the inquiring minds, the objective of this surgery, known as the Fontan, is to attempt
(for the second time) to complete the rerouting of Caleb's circulatory system so his
deoxygenated blood returning to his heart goes directly into the pulmonary artery to be
oxygenated, bypassing the heart; hence reducing the overall workload on his weak heart.
As always, we encourage you to look to God through Jesus Christ to meet all your needs. We
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Update: Wednesday, September 15th, 1999
Praise God! We just got the latest results from Caleb's Infectious Disease doctor. The
Fighter's immune system continues to slowly rebound; his CD4 count is now up to 395 (from
a low of 256). It has been slowly climbing since he started taking antiretroviral
His viral load is now 41! Down from 28,980! Praise God!
Another significant development is that Caleb is again scheduled to go under the surgeon's
knife. This will be his fourth open-heart surgery; scheduled for November 2nd, 1999. May
God continue to be glorified through this child! May you place your faith and trust solely
on Christ and Him alone! He loves you!
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Update: Saturday, August 7th, 1999
Caleb's local Pediatric Cardiologist called today to inform us of the decision he and
our son's heart surgeon reached after discussing the latest evaluation of our son's heart.
Their assessment is not good news. They are NOT inclined to advise we proceed with
attempting the Fontan surgical procedure which was unsuccessfully attempted one year ago.
Their recommendation is based on two issues, 1) they feel Caleb's heart, aside from his
HIV+ status, is too weak to warrant risking the surgery, and 2) given the weakness of his
heart, the surgery may not actually improve his circulation, in other words, will likely
As you might imagine, we are disappointed. The most disconcerting aspect of this most
recent medical recommendation is that because Caleb is HIV+, based on today's medical
technology, the much anticipated heart transplant is not possible. Hence, Caleb's options
are now limited to: 1) Miraculous healing, or 2) a medical technological advance
sufficient to allow heart transplantation for HIV+ patients or a breakthrough
cardiothoracic surgical therapy for children with Hypoplastic Left Heart Syndrome (HLHS).
While we are not entirely pleased with today's news, as always, we trust in God, and look
to Him to deliver our son. We are again reminded of the verse spoken to us through our
precious Ghanaian Brother-in-Christ, Clement, "I will not die but live, and will
proclaim what the LORD has done." Psalm 118:17 [NIV]
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Update: Thursday, July 8th, 1999
After being on the high-powered antiretroviral medications for just six weeks, Caleb's
viral load (amount of viruses per ml of blood) has decreased from 28,000 in mid April 99
to less than 400! Given that there is a three-fold variation (possible error) in counting
viral loads, and that the minimum detectable level is 100, a "less than" 400
viral load could be considered as though equal to 100 which is the minimum detectable
level of the virus; i.e. negligible.
What I'm really trying to say is that this blood test showing less than 400 viral load
means the on-going effect of this (HIV) virus on his immune system is (for all intensive
purposes) "currently" technically neutralized.
His immune system, on the other hand, is still in need of robust improvment. We are
thankful that although his immune system is still severly compromised, it is now showing
"slight" signs of rebounding.
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Update: Wednesday, June 23, 1999
As of today, Caleb has now been on anti-retroviral (anti-HIV) medications for 30 days.
The first two weeks were rather rough. Due to the significant increase in the volume of
fluid medications he's now getting, he has struggled with frequent episodes of
"reflux" (stomach contents backing up into the esophagus) accompanied by
occasional vomiting. The refluxing is hard on this little boy; not to mention his parents.
It is always worse during the night when we'd "like" to be sleeping.
Kathy--bless her Lord--has been laboring nightly with Caleb as though nursing a newborn
for over 2 years without complaint.
Caleb's needed next open-heart surgery, which was formerly scheduled for June 17, has
beendelayed until his immune system shows a positive response to the anti-retroviral
medications. Until that unspecified time, we thank you for joining us in prayer. Our
specific focus in prayer is that the component of his immune system which is targeted and
"reduced" by HIV, his CD-4, lymphocyte count would improve to above 500
cell/uL.[His last count was 256, which is approaching a dangerously low limit; normal
being 1,500 to 2,000.]
Praise God for our dear Sister-in-Christ, Jennifer Raymond who spent an entire night with
Kathy and Caleb to get "trained" prior to accepting responsibility to care for
him "solo" for four days while we "vacationed" at Pere Marquette, a
state park north of Alton, Illinois. Thanks Sis'. God bless you. It was a much needed time
While relaxing at Pere Marquette I read a book by Elizabeth Glaser entitled, "In the
Absence of Angels" about her courageous battle with HIV. She and her two children
were infected with HIV by a blood transfusion she received after delivering her first
child in 1981. Both she and her first child have since died of AIDS. My son and many
others have Elizabeth Glaser to thank for her success in generating attention and private
and public funding for Pediatric AIDS research. Until just before her daughter died in
1988 there was no FDA approved Pediatric HIV medicine. Today there are over a dozenlargely
because she "forced" the issue and raised millions of dollars for research
through the Pediatric AIDS Foundation of Santa Monica, CA, which she created.
Elizabeth, we can't thank you enough.
Caleb has been growing remarkably well lately despite the added challenge of tolerating
the antiretroviral medications. He is routinely repeating "EVERYTHING" we say as
well as constructing his own original 2, 3, even 4 and 5 word sentences! Praise God!
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Update: Sunday, May 23rd, 1999
We returned home from the National Institute of Health in Bethesda, Maryland on
Wednesday. It was a productive week. We received important medical recommendations for our
"Fighter" Caleb. We praise God that EVERY doctor in the center who saw Caleb was
"amazed" at how well he is doing given his complex medical history.
The chief of the oncology/HIV centers told us he was shocked when he "met"
Caleb. From listening to his staff discuss Caleb's case he expected a child on life
support, not the vibrant Caleb he met. We told him it was God who was responsible and
deserved the credit, thanks and praise for how well Caleb is doing.
Although Caleb clinically appears to be doing remarkably well, his immune system is now
showing an even greater adverse affect than it was two weeks ago. Caleb could become
vulnerable to life-threatening opportunistic infections if the HIV attack is not somehow
soon thwarted. Therefore, we're putting Caleb on a regimen of three high-powered anti-HIV
medicines. Join us in praying that there will be none of the troublesome side effects for
which these medications are infamous.
As a result of commencing this new medication Caleb's next open-heart surgery previously
scheduled for June 17th is indefinitely postponed.
May God continue to be glorified through this precious life!
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Update: Thursday, May 13, 1999
So far, since Caleb has been here atthe National Institute of Health (NIH) he has
amazed the medical staff. Many have commented that they expected him to be
sicker. The staff, the foremost HIV experienced clinic in this country have noted
that they are "really shaken" by Caleb's case. In other words, this being
the first HIV transmission by blood transfusion case they are aware of since 1985 when
testing was implemented, has them quiteupset.
Along with winning the heart of each medical person we've met here, today Caleb amazed the
neuropsycological examiners by demonstrating to them that his cognitive and fine motor
skills development are on par with "normal" two year olds. Despite
thedanger of the HIV taking up residence in his brain and spinal cord, it would seem the
child has suffered no ill effects yet... Praise God!
Caleb further amazed the pediatric cardiology staff when he slept through the one hour
echocardiogram test of his heart.
The greatest event of today was when we had the distinct privilege of ministering the life
changing gospel of Jesus Christ to fellow parent, a mother of five who's fourth child has
a rare and very troubling medical syndrome. As we shared with this mother she
commented that just yesterday as she was at the end of her rope she prayed for God to send
someone to help her understand what she was missing and help her deal with her son's
tragic medical ordeal. She wept great tears of joy as we led her in prayer to accept
the grace of God by acknowledging Jesus Christ as her Savior and Lord, hence receiving the
gift of eternal life!
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Caleb's Esophageal Atresia/Tracheoesophageal Fistula
Type C Esophageal Atresia with Tracheoesophageal
The upper segment of the esophagus ends in a blind pouch (EA). The lower
segment of the esophagus is attached to the trachea (TEF). This is the most common type of
EA/TEF. (Incidence: 86.5%)
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Caleb, the Fighter
Our son, Caleb, which means "Fighter" in Hebrew, was born on
March 4th, 1997 at Camp Lester Naval Hospital, Okinawa, Japan. We had no expectation that
this child would be any different from our first three, normal, healthy children. Within
minutes of birth we discovered he had an imperforated anus. Within an hour we discovered
he was born with a Esophageal Atresia with Tracheoesophageal Fistula(EA/TEF). About four
hours after birth he was diagnosed as having Hypoplastic Left Heart Syndrome. We were
later to discover his imperforated anus also included a urinary-rectal fistula. All total,
in his first year and a half of life we spent about six months in and out of hospitals
He was operated on within six hours of birth to put a gastrointestinal tube (G-Tube) in
his stomach so there would be an outlet to allow air to be vented out of his stomach
during flight. The G-tube has proven to be a life saver since then as we've used it ever
since to nocturnally "force-feed" him using a continuous pump. During that first
surgery, since he was tolerating the anesthesia well, the surgeon also put a loop
colostomy in (which he uses to this day). The next morning, just 18 hours after birth he
was sent via an US Air Force C-141 Urgent Medical Evacuation flight to Travis Air Force
Base, California. After stabilizing him at the Neonatal Intensive Care Unit at the Travis
Base hospital, he was transported via ambulance to the University of California, San
Francisco Medical Center, Moffit Hospital.
When he was just three days old he underwent his second successful surgery to connect his
esophagus to his stomach. Incidentally, since I am an US Air Force Academy graduate, it
was of particular interest that his surgeon, Dr. Rusty Jennings, was an Annapolis, Naval
Academy graduate; thus affording a reason for friendly rivalry between surgeon and patient
father. Three days later Dr. Frank Hanley successfully performed the Norwood, stage one
surgery wherein Caleb's aorta was augmented with homograph (cadaver tissue), and his
patent ductus arteriolis was replaced with a gortez shunt to serve as a temporary
life-saving measure to conduct blood flow from Caleb's pulmonary artery to aorta until his
next open-heart surgery. Due to the many complex surgical procedures to connect his
esophagus and work on his heart he was kept in a chemotheraputically induced state of
paralysis and on a respirator for nearly three weeks. Finally, at 18 days of life he was
allowed to take some food by mouth for the first time. At 32 days old, he was discharged
from the hospital for the first time. Since the airline he and his mother were scheduled
to fly to Michigan did not have in-flight oxygen immediately available, the Ronald
McDonald House of San Francisco allowed him and his mother to stay in Kathy's room until
the in-flight oxygen became available four days later.
Over the next several months Caleb struggled with various illnesses including an infection
which resulted in his fourth surgery at two months of age, which was his first surgery
conducted at Mott Children's Hospital, the University of Michigan (U of M) Medical Center,
Ann Arbor, Michigan. At six months of age, he underwent the Hemi-fontan (Norwood stage
two) surgery under the knife of Dr. Ed Bove. We were very pleased with the
"service" our son received at the U of M Medical Center.
The month prior to being admitted all four of our children got chicken pox--including
Caleb. Although the Hemi-fontan was successful, that hospital stay extended for over two
months due to post surgical complications which resulted in another, his sixth surgery to
repair his lower esophageal sphinkter (LES). This procedure, known as the Thal
Fundoplication was a surgery wherein the anterior (front) portion of his LES was literally
"wrapped" with a moderate amount of stomach tissue to decrease his problematic
refluxing. Reflux, stomach contents coming back up the esophagus, is a common problem for
children with TEF. Over the next winter, Caleb was plagued by various illnesses resulting
in dehydration and several subsequent hospitalizations caused by the roto virus. He rode
quite a "hydration" roller coaster for a while. Finally, the next spring, after
many medical tests and his first birthday he had a seventh surgery, known as the
"Pull through" wherein his imperforated anus and urinary-rectal fistula were
repaired. Unfortunately his heart was deemed to weak to justify a subsequent surgery to
close the colostomy. Therefore his loop colostomy is still the primary means of waste
His echo cardiograms (heart sonar-type video X-ray) began to show such severe leakage of
the tricuspid valve that his local cardiologist, Dr. Arnie Strauss, in coordination with
Dr. Amnon Rosenthal, U of M Pediatric Cardiologist, and Dr. Ed Bove, U of M Chief
Pediatric Cardiothoracic surgeon, decided we'd better proceed with his Fontan, third stage
Norwood surgical therapy as soon as possible. He was therefore scheduled to have the
Fontan performed at 18 months of age, slightly sooner than the norm. The objectives of
this, his eighth operation were to complete stage 3 of the Norwood and "cinch"
down the tricuspid valve, hoping to decrease its leakage which would allow the heart to
decrease its work load, thus decreasing the dangerous enlargement of his heart. After
opening his chest, Dr. Bove gravely decided the severe enlargement of his heart would only
warrant tricuspid valve repair, NOT the Fontan.
His recovery was as topsy-turvy as the previous heart surgery. There were times we weren't
sure he was going to make it. Through it all we trusted in Jesus to provide strength for
our little Fighter. We appreciate his local cardiologist, Dr. Arnie Strauss, who saw him
on his second birthday and remarked how fabulously he was doing! Two days later, on March
6th, 1999 we celebrated his second birthday with over a hundred people attending the
biggest birthday party we'd ever been a part of! We felt we had so much to
celebrate! We celebrated the life of God in our special boy. The best present
was that just before his birthday he FINALLY began to walk. Now he's walking and
learning to talk. Hallelujah!
As we "patiently" anticipated his next, ninth major surgery, which would
reattempt the Fontan, scheduled for June 17th, 1999 at the U of M, Mott Children Hospital,
we received a phone call that was to radically affect our little Fighter's future. A
donor from whom Caleb received a blood transfusion in July 1998 tested HIV positive
subsequent to the donation. Although the doctors instructed us to have Caleb tested
merely as a precaution, much to the dismay of all he has been diagnosed as HIV positive.
Caleb is now trudging down the path of this dreaded disease. With an immune
system at least mildly to moderately adversely affected by the virus, Caleb is seeking
evaluation by the nation's foremost HIV research center, the National Institute of Health
(NIH) in Bethesda, Maryland.
As always, we remember a verse of scripture given to us the day Caleb was born by Clement,
a special brother in Christ from Ghana with whom we fellowshipped at our church in
Okinawa, "I will not die, but live, and declare the glory of the LORD."
Psalm 118:17 [KJV].
Despite the uncertain future, we look to the Lord
Jesus, Author and finisher of our faith!
Caleb is such a cheerful little boy; so full of zest, may we all learn to enjoy life to
the full with like, simple, childlike faith.