- It was always our dream to have a large family. We were blessed with four healthy children, and felt that
God would continue to bless us with more children. My pregnancy with Hunter was “normal” and we couldn’t
wait to meet our new baby! We loved him so much before we even met him! We welcomed our fifth beautiful
baby at 4:30 p.m. on September 23, 2002. He was perfect in every way, just like his siblings. His doctors even
said he looked as if he had been tanning on the beach! Hunter was so calm and perfect in every way. We
brought him home and had a birthday party for him with his brothers and sisters. We felt for the moment that
“our quiver was full!” Our hearts grew even bigger as we adjusted to life as a family of seven, but still hoped
for 2 more children.
Hunter was happy and thriving, doing all the cute baby things a newborn baby does. Yet when he was 6 weeks
old, we noticed the very corners of his eyes appeared to be yellow, but it only seemed to be every now and
then. When we took him to the doctor for a cold, our pediatrician’s associate did a blood test to check Hunter’s
bilirubin levels (a test that detects how the liver is functioning) because he “appeared to be a little yellow.” His
bilirubin was a little elevated, but the doctor said it was not uncommon for 6-week-old babies to still be
jaundiced. We thought that was strange because he was never jaundiced to begin with. The doctor told us to
make sure we followed-up with our regular doctor at Hunter’s 2-month visit.
When we saw the pediatrician at Hunter’s 2-month check-up (two weeks later), she immediately said
something was not right with Hunter because of the jaundice and sent us to have lab work done. All
of his liver enzymes came back slightly elevated. She recognized that Hunter needed to be seen by
a pediatric gastroenterologist right away. At this point we became aware that this was not run-of-the-mill jaundice. This all
happened the week of Thanksgiving 2002, and we finally saw the pediatric gastro the following week on December 5th, 2002.
Needless to say, Thanksgiving was extremely difficult. How could we be thankful when we knew something was wrong with our
precious baby? Somehow we made it through the holiday and before we knew it, it was time to see the gastro. The
gastroenterologist was immediately concerned about Hunter’s color and sent us to have lab work done. He also put Hunter on
medicine and vitamins, changed his formula, and went through the list of pediatric liver diseases that Hunter might have. We had
an exhausting week of outpatient tests and lab work at Texas Children’s Hospital. Even through the poking and prodding, Hunter
was still so happy and perfect in our eyes.
December 12, 2002 was the day our lives changed forever. Hunter was diagnosed with Alpha-
1 Antitrypsin Deficiency. Alpha-1 is a genetic disease that has no cure, "the worst outcome is the need
for a liver transplant". Alpha-1 progresses very differently in different people. Many people are not
diagnosed until adulthood. We also learned that either both of us were carriers or that one of us also
had Alpha-1 and the other was a carrier. We realized that our other four children could also have Alpha-
1, or be carriers and the burden became even greater. The doctor told us he felt there would be a cure for Alpha-1 in Hunter’s
lifetime (at least that was a little comforting). We felt angry at his diagnosis because we had never heard of this disease and
thought the doctor must be wrong! At that time Hunter’s only symptom was jaundice. He was still laughing and playing – how
could he have this horrible diagnosis?!? We were then referred to the pediatric hepatologists, Dr. Saul Karpen, at the Texas
Children’s Liver Center, which is run by Baylor College of Medicine and Texas Children’s Hospital. This clinic is at the forefront of
cutting-edge research and patient care. We felt very fortunate to live near the Texas Medical Center, and hoped that Hunter
would benefit from the miracles performed there. We did some research on the Internet, but what we found was too terrifying to
face. The Christmas season is one of joy, yet we felt our lives falling apart around us. We spent the holidays in shock and denial,
but tried to celebrate as usual for our kids’ sake, all the while worrying what the future held for Hunter.
We brought our seemingly healthy 4-month old baby to the pediatric hepatologist (a doctor that specializes
in liver disease) at the Texas Children’s Liver Center on January 29, 2003. We were very apprehensive about
meeting Hunter’s new doctor, but felt immediately reassured when we met Dr. Karpen, the Center’s director.
He took us “under his wing,” really explained things to us, and listened to our fears and concerns. His bedside
manner made things much easier on us. He did more lab tests and examined Hunter, and concluded that
Hunter would be a patient he would follow routinely for years, because Alpha-1 is known as a slowly progressing
disease. (Unfortunately, we now know that this wasn’t always the case with our Hunter, but so much more research needs to be
done to learn more!) We were very concerned about the need for a transplant, but Dr. Karpen reassured us that Hunter was not
that sick yet, and that he would let us know when the time came to put Hunter on the transplant list. Hunter was still very yellow,
but Dr. Karpen prescribed more medicine and vitamins and expected him to look better within the coming weeks. Dr. Karpen
asked us to take Hunter to our pediatrician for a monthly weight and length check, and return to the Liver Center every three
months for a check-up. We were so relieved that our baby would be okay and were looking forward to having a normal life with a
“controllable” disease. We focused our attention on keeping him healthy until researchers found a cure.
Hunter was doing well until the end of February (it had only been a month since we had seen Dr. Karpen). At that point, his
tummy began to get very large and he began to turn so yellow that he almost looked green! We took him
to our pediatrician for a weight and length check and had her look at his tummy. She said that he had fluid
on his stomach – this is known as ascites. We could not believe it and didn’t know exactly what that meant
for Hunter. This was not how things were supposed to be going! We called Dr. Karpen and he wanted to
see Hunter the following week. At our March 5th visit, we could tell immediately that Dr. Karpen was
concerned with Hunter’s stomach. He put him on a diuretic and more vitamins and changed his formula
again in hopes to get the fluid off his stomach. We brought up our transplant concerns again, but Dr. Karpen
reassured us that it was not yet time for a transplant. He sent us home in hopes that this medicine would work
and wanted to see Hunter again in a week. Dr. Karpen called us at home every day to check on Hunter – we
knew he was concerned because the Director of the Texas Children’s Liver Center does not routinely call to check on patients
- at home. Hunter remained happy and playful, but we could tell that his large stomach made
some activities such as rolling over and scooting uncomfortable (which he eventually quit doing because
his his tummy was too large). We knew he would have some catching up to do in the future, but felt
that that once he got better he would be able to “catch up” quickly. Honestly, we had no idea what lay
in store for our little Hunter.
Hunter’s stomach had not gotten any smaller. Dr. Karpen wanted to give him I.V. treatment to see if the fluid
would come off that way. Although we had decided not to bring up the transplant issue at this visit, Dr. Karpen
shocked us by saying it was now time to list Hunter. He had assembled the liver team and we met everyone from
the coordinator to the transplant surgeon. The strangers who we just met became the most important people in
our lives. Even though we had anticipated this and done the research, we were still absolutely stunned that this was happening to
us and to our child. We were not a made-for-TV movie, yet here we were in the middle of the most dramatic situation we could
have imagined. The liver team began the process of listing Hunter for a liver transplant; he was officially listed on March 19th,
when he was almost 6 months old.
We were admitted to the 12th floor of Texas Children’s Hospital, where we stayed for two weeks.
Hunter’s liver was already large and beginning to harden. They were concerned because he only
only weighed 14 lbs, and they wanted him at least 18 – 20 lbs. before the transplant. They tried many
triedmany different variations of formula to make him gain weight, yet nothing worked. They finally put a
a feeding tube in through his nose (to help him gain weight through extra nutrition), which was terrifying
to us. After the initial shock of seeing him with the tube, we saw it as just another part of him, and another step towards
transplant. It was devastating that we could no longer give him a bottle because of the tube. We could
tell that Hunter was worsening because he was more fatigued and so very concerned that the fluid
would not go away, but Hunter never lost his happy temperament! He even learned to shake his head
"no" to the doctors and nurses – which melted their (and our) hearts! Meanwhile, his lab results were
getting worse, and we continued to see doctors on an hourly basis. Because children who have
transplants can no longer receive live immunizations, the liver team accelerated Hunter’s vaccines.
He got the rest of his yearly shots (excluding live vaccines) in three days. Hunter was pretty high up on the transplant list.
Basically, it meant we could get a call any time of the day or night.
Hunter received the best medical care possible at Texas Children’s Hospital, and we met wonderful
people who are devoted to caring for children. Even though Hunter still had a lot of fluid in his belly, he
came home on March 29th. We were so excited to be at home with our other children and Hunter
LOVED to laugh and play with his family too - even though the kids couldn’t actually touch him. We were
concerned that he might catch a cold or another virus from one of our other kids, and you are not eligible
for a transplant if you have any type of cold or virus symptoms. We didn’t want Hunter to be exposed to
anything, but the doctors stressed that we should give him as “normal” a life as possible during the waiting period.
Hunter went home from the hospital on 10 medications in the morning and 8 in the evening. We had a dry erase board with all
his medications on it that made it so much easier to remember everything. The only positive thing we can say about the feeding
tube is that at least we didn’t have to give him these medications by mouth. It still took us about 45 minutes to give him the
medications, because he was so tiny, if you gave the medcines to him too fast he would vomit them back up. Not only was this
physically and emotionally draining, it was financially draining as well. After finally finding pharmacies that carried some of his
unusual meds, the costs were an expense we had never planned for. Our church family had given us prayers and comfort
throughout this experience, and at this time they also took a love offering for Hunter. What a blessing that was for our family!
After a sleepless week of learning how to do medications and care for a feeding tube (and homework for three kids), we
returned to the liver clinic on April 2nd. We both knew Hunter was not looking good. When Dr. Goss, the transplant surgeon, saw
Hunter he immediately said Hunter needs a liver NOW. His ascites was not getting any better, even after being on huge doses of
diuretics. The doctors decided that they would continue to try to put weight on him by putting in a central line while we continued
to wait for another liver. Hunter was being admitted again after being home only 1 week! While we were waiting for a room at the
hospital, the transplant team met about how seriously ill he was and decided to list him “Status 1.” We were beginning to be really
scared – it’s unbelievable to hear that your 6-month-old infant will be having a transplant. The doctors told us they could use a
section of a small adult liver, but due to Hunter’s size they preferred a whole organ from an infant or child, which are very hard to
come by.
We got in a room that afternoon and were beginning to settle down for the night when the phone rang. (David had just left to
go home to be with the other kids.) It was Dr. Karpen saying that they had a liver for him. He told us to wait for an hour and they
would know if it was a good match. That was the longest hour, but at least it gave David time to turn around and get back to the
hospital. The phone finally rang again and the transplant coordinator said it was a good liver and Hunter would be transplanted
within the next few hours. Although families are not given information about the donor, we know the liver was from a six-month old
baby at a hospital in the Texas Medical Center. This is what we had prayed for and felt that God was answering the many prayers
offered up for Hunter. The emotions we felt were of great relief, but also grieving for the family that lost their baby. (We cannot
contact the donor family for a year except through our coordinators and we made a vow to send something to the family in great
appreciation for the gift they gave our son. We would love to meet them one day and thank them.)
Hunter’s transplant began at 4:30 in the morning on Thursday April 3rd. The four-hour surgery went well
well with no complications at all! We were so blessed to be starting our new life with a healthy liver for Hunter!
Hunter! Hunter was to stay in ICU for at least four days. When we first saw him, it was overwhelming. He had
tubes and IVs in every part of his little body and he was so swollen, he was almost unrecognizable.
We knew this was all part of recovery, but it was still shocking to see. We were there round-the-clock, until
the hospital staff made us go to the Ronald MacDonald House on another floor of the hospital to get a few hours sleep and a
shower. The next morning, we walked into his room in ICU and there was a tech doing an ultrasound. We thought this was odd
because the doctors said that there would be no need for an ultrasound. Through much worry and concern, they eventually told
us there was no blood flow coming from the liver. The surgeon said he would have to operate again to see what was wrong, but
was hopeful that it was something simple that could be easily fixed. Hunter went back to surgery that evening. During the surgery,
we just felt that something was wrong. It was supposed to be less than an hour long, and it took four hours… as long as the initial
transplant. When Dr. Goss finally came out of surgery, he looked so shaken that we thought we lost Hunter! He took us into a
private area and told us there was a blood clot in one of the major veins and that the blood supply to the liver had been cut off for
too long. The new liver was beginning to fail. During surgery, Dr. Goss made arrangements to re-list him as Status 1 for another
liver - any liver - just to get him through until a match could be found. Dr. Goss even asked if any family members here at the
hospital would be willing to be a living donor, and donate part of their liver for Hunter. Hunter’s great-aunt agreed to be worked-
up, so that process began at midnight on Friday, but she ultimately was not a good match. The ICU staff let
our immediate family come back to Hunter’s bed, which meant they were sure he would not make it through
the night. It was a terribly hard night! We cried and prayed all night, and the hospital chaplain came in and
prayed over our baby. We still were not able to hold our baby. To be told he was not doing well and not be
able to hold and comfort him was the worst feeling in the world!! To our surprise, on Saturday morning Hunter
began to come out of anesthesia. The doctors were so pleased that our baby was a fighter! They felt he could
hang on until another liver became available. He was Status 1 all weekend, but we never received a call that
there was another liver for him. We just couldn’t believe that a whole weekend passed without someone donating
a loved one’s organs! Because he was still hooked up to a ventilator to help him breathe, we couldn’t pick him
up, and the nurses didn’t want us to talk to him because he got too agitated when he heard our voices (just because he was
wanting us!) We wanted so badly to hold him again!
On Sunday, Hunter was still trying to wake up, but seemed to be doing okay to us. We still thought he was going to pull
through. But that evening we noticed he was not moving and we were just watching the monitors to get a sense of how he was
doing. The doctors then did labs to check his ammonia level. (Too much ammonia in the blood causes the brain to swell. The
level gets high when the liver is failing because the liver cannot filter the ammonia out of the blood). His level continued to rise
overnight and through Monday morning. They treated him with medication throughout the night, which did not lower the ammonia
level. On Monday afternoon, his vital signs plummeted and the ICU staff did everything they could to stabilize him. When we look
back on this time, we feel this is when we really did lose him. His doctors recommended emergency surgery - his 3rd surgery in
five days. They put in another central line to do hemodialysis, taking the blood out of the body, getting rid of the ammonia, and
sending it back to the body. They did hemodialysis the rest of the day and night, and his ammonia level slowly started to drop
slowly. The ICU staff told us that he should begin to wake up, but that never happened. There were so many machines and
tubes that we couldn’t get close enough to touch him!
At 5:00 on Tuesday morning, we were resting in the waiting room (again at the hospital staff’s discression) and got a call that
they finally received another liver for Hunter. We were excited and ready, but also concerned because it would be his fourth
surgery in 6 days. They reassured us that it would be okay. Since he was not responsive, they wanted to do a CAT scan of his
brain before the surgery. Dr. Karpen came in after the scan and said that Hunter’s brain had massive swelling and that he was
already brain dead. They called in a neurologist to confirm the results. They concluded that the transplanted liver had failed and
caused the ammonia level to be too high for too long. Hunter was still on a ventilator and at this point we had to decide to remove
him from life support or wait for his body systems to fail on their own. We decided we had to take him off, and we wanted to do it
before his brother’s 13th birthday the next day. A friend went to get our other kids from school. They each came in and were
able to see him one last time and say goodbye. I can honestly say this was the hardest thing we’ve ever endured. We finally got
to hold him in our arms when they turned the ventilator off. This was the first time we’d been able to hold him in six days. At this
time our pastor dedicated him to the Lord. He passed away in our arms at 3:41p.m. on April 8th. His grandparents, physicians,
and pastor were with us in his room, and we had a waiting room full of friends and family.
Hunter will always live in our hearts and through the faces and lives of our other four children. They all have the same eyes
and smile as our little Hunter. The love we have for Hunter can never be replaced. He was such a precious little child from the
minute he was given to us. We are sharing our story because we feel that all he went through can help save the lives of other
children.
You can help by doing three simple things today:
Take the time to be tested for Alpha-1.
Talk to your family about organ donation.
Make a financial contribution for lifesaving research
Hunter truly touched each and every person he met during his brief life.
We believe he was our precious angel that we were fortunate enough to hold for a
very short time. Thank you for taking Hunter into your heart!
We hope his story inspires you to make a difference!
Marcie and David Heitzman
