In Loving Memory
Click on a child's name below to show their story. Click again to collapse the panel, and select another to open.
Allison Nicole Bell ~ April 28, 2000 - February 19, 2001
Allison was 9 months old when she died from complications of liver failure after a surgery to remove a partial bowel obstruction. She had biliary atresia, which was diagnosed at 7 weeks of age. She had a Kasai procedure that same week and was doing very well. The obstruction surgery was just too much for her fragile liver to handle and she went home to be with the Lord.
Allie was a beautiful child, happy, curious, and playful. She loved to be held and cuddled, to play with her mommy's hair, to read books. She particularly enjoyed the book Peek-A-Boo Bunny, because she always knew where the animals were hiding, and it made her laugh to find them. She was a very smart little girl. She had big, round brown eyes that were always taking everything in, and she had a little neck she would crane around to see if anyone was in the mood to play. A friend told me Allison was so inquisitive because she knew her time with us was short and she didn't want to miss a thing.
We learned much more about liver disease than we ever thought we would. Allison was a complicated little girl, but she was so cheerful and seemed to be mostly unaffected by the conditions she endured. She touched so many lives and is an inspiration to us. There will always be a space in our hearts that misses her, but we know she is in very capable hands.
Today is just one day less until the day we see you again, Allison. We love you.
By her mother, Kristi Bell
Ava Renee Gabler ~ January 26, 2004 - October 5, 2004
Our daughter was 8 months old when she passed away at Texas Children's Hospital in Houston, Texas. She had been through so much in such a little time. She was born on January 26th, 2004. The birth was quick, everything appeared to be fine and there was no indication of any problems during the pregnancy. Daddy went with Ava to the nursery where she was accessed, cleaned and bundled up to be released to our recovery room. One of the nurses noticed she was a little blue around the lips and nose, after checking they found that her oxygen saturation level was a little bit low so they wanted to monitor her. Eventually her oxygen level improved and we were relieved. However, the following day we were told that a blood test had revealed that her bilirubin level was higher than normal and they wanted to take a second blood test. Like a lot of people, this was the first time we had heard the word bilirubin, but we all now know how that word rules your life.
The second blood test revealed a slightly lower number but still elevated and the neonatologist said that they had contacted a GI and they were going to do an ultrasound on her belly. We weren't sure what to think, we had no idea what was in store. I went with Ava during the ultrasound and remember them talking about the gall bladder. It turns out, of course, they couldn't find it. Since Ava had eaten prior to the ultrasound, they waited awhile and performed another ultrasound just in case her stomach was blocking it. That was the second day of her life and we still had no grasp of the seriousness of what was happening.
The following morning, a heart murmur was detected on Ava and an echocardiogram was performed. That afternoon was when we were bombarded with the possibility that Ava had biliary atresia. However, they still held out hope because she had a cyst near the liver and they thought that maybe the problem. At the same time the GI was talking to us about possible scenarios, the neonatologist walks in and says that Ava has a problem with her aorta and she will be taken to the NICU. It turns out that she had a narrow spot on the aorta and the condition is called coarctation of the aorta. We spent several days in NICU and then transferred to Children's Hospital of Austin to await surgery to correct the aorta. In the meantime, further blood tests, ultrasounds and HIDA scans fail to convincingly diagnose biliary atresia. Therefore, after her heart surgery and recovery, exploratory surgery takes place to definitively diagnose the bilirubin problem. Ava was found to have biliary atresia and also malrotation of the intestines. The Kasai was performed and her intestines were adjusted at 22 days old. This was February 17th and just the beginning of our journey. We dealt with the same issues that every other parent here has dealt with. The constant hospital admissions, infections, feeding problems, feeding tubes, IV'S, blood draws, etc.
Unfortunately, her liver disease progressed for the worse and Ava was put on the transplant list on August 11, 2004. Two days later were her 6 month immunizations and since one was a live vaccine Ava had to be put on hold status for 4 weeks. Later, the transplant coordinator had said two livers did come up, during this time period, but Ava had to be passed over because of the live vaccine. She was put back on the list September 11, 2004 and we got our first official call 3 days later. Ava and Daddy were already at the hospital being discharged on this day but they said we weren't going anywhere because we got a liver. Unfortunately, after waiting 9 hours, we got the call that the liver was too big, even for a split liver.
Ava had many complications the biggest being her weight gain and size. After stalling at 12 pounds, Ava had a central line placed in early August and she was finally gradually gaining the weight and getting bigger. Ava was initially listed with a PELD score of 18 and it had increased to 20 with all the complications, so we felt secure that at some point we would get the real call. Throughout all of this, Ava was still her usual adorable self and took everything in stride since she was too young to know any better. The doctors felt that with 2 offers during her hold status and the one call after being back active, that the right liver would come soon. We had time to allow her to keep gaining the weight and get bigger.
On September 20th, we were admitted back to the hospital with ascites again and this time it is decided that we will just stay in the hospital until transplant since we were just waiting for the call. The ascites is dealt with, but Ava is found to have another urinary tract infection, so she has to get antibiotics again for that. Ava was found to have a urinary tract reflux, which was causing the infections so surgery was planned to fix the problem she was having with her bladder. On Sunday, October 3rd, we were put into the ICU because Ava quit urinating and we were told later that Ava's kidneys had shut down and she needed to get hooked up on dialysis. This made any possible transplant secondary as this problem now needed to be worked on before a new liver or living donor portion could be transplanted into Ava. The first attempt at administering the dialysis had to be stopped as Ava's blood pressure and oxygen saturation levels dropped to dangerous levels. During the second attempt at starting dialysis, Ava passed away as her little body just got tired of fighting all this.
We learned much more about liver disease than we ever thought we would. Ava touched so many lives and is an inspiration to us. There will always be an empty space in our hearts, but we know she is in very capable hands free of pain and in true peace.
We thank her doctors, Dr. Berhane at Children's Hospital in Austin and Dr. Karpen, her transplant doctor in Houston. We appreciate everything they did for our little angel.
We all miss you baby girl.
Caleb ~ 1999 - January 28, 2005
In 1998, Caleb was diagnosed with Alpha-One Antitrypsin Deficiency and received a liver transplant at the age of 7 months. Life from there went pretty smoothly; it had its ups and downs with the anti rejections meds and what not but all was well.
On May 23 at the mere age of 6 Caleb was readmitted to the hospital due to an infection. This triggered them to run tests. On June 2nd they found that his lymph nodes were very enlarged and that he had Epstein Barr Virus active in his tissue cells and might have Post Transplant Lymphoproliferative Disorder. From there they found that he had 2 tumors. On July 15, 2004 he underwent a 6-hour surgery to have the tumors removed. On August 17, 2004 we received a call confirming that he does have (PTLD) Post Transplant Lymphoproliferative Disorder, which is cancer of the lymph nodes. Treatment started on September 8th and everything went very well at the beginning. He lost some hair but he didn’t care. He just ran around with his little bald head just a shining when he felt up to it like nothing was wrong with him.
Things started having their ups and downs but all went fairly well still thru Christmas. Caleb gave us the best Christmas ever. It snowed here in Texas and Caleb spent hours on end outside playing making snow angels with his brother and just having a blast. We will always remember that Christmas. January rolled around and his hair started growing back in. However, his fevers were coming back and we started to get worried. The doctors said things weren’t looking good, they wanted to run some more test. So they did but they said it was too late. The PTLD had come back too fast and rapid; there was nothing more to do. We decided to bring Caleb home because he said he was ready to go home. He spent a few more peaceful nights at home with his family. He slipped away from us January 28th, 2005 at the age of 6.
We want our appreciation and thanks to go out to all of Caleb's Doctors (especially Dr. Rytting, Lisa, and Cad) and all the staff at MD ANDERSON they were all very wonderful people. We would also like the thank the Make a Wish foundation
and Penny for making his wish come true.
Love Always & Forever. We miss you buddy, and we love you, you'll always be "Our little angel."
Cheyenne Alexandra Robinson ~ February 23, 1998 - June 21, 1999
My daughter was 16 months old when she passed away at the Baptist Hospital in Oklahoma City. She had been through so much in such a little time. Cheyenne was born with biliary atresia and had the Kasai procedure when she was 8 weeks old. Afterwards, she was in and out of the hospital with ascending cholangitis. On June 12, 1999, she had her liver transplant. It lasted 3 days. She was put on life support and she made it 7 more days before she was declared brain dead. When she passed away we donated her heart to a girl in Georgia. That was the hardest day of my life. Cheyenne was my pride and joy. We all miss her very much. We thank her doctor, Dr. Steele at Children's Hospital and Dr. Nour, her transplant doctor. We love them very much and appreciate everything they did for our little angel.
We all miss you baby girl,
Mom and Dad
Grandma and Grandpa Martin
Grandma and Grandpa Nelson
Grandma and Grandpa Robinson
Great Grandma and Great Grandpa Cody
Great Grandma and Great Grandpa Jones
and all Aunts and Uncles
God gave us a treasure in you
God gave us a treasure of immense and untold worth,
And brought a touch of Heaven to our life here on earth,
For He sent us someone wonderful; an angel from above,
When He blessed us with the gift of you,
Our Destiny, Our Joy, Our Love.
Missed deeply by Mom, Dad, Sister, Brothers, and a host of relatives and friends.
Sunrise 7-17-2000 ~ Sunset 3-16-2001
Hunter Lee Heitzman ~ September 23, 2002 - April 8, 2003
Website: Hunter's Gift
Our baby, Hunter Lee Heitzman, was born September 23, 2002. He was the youngest of 5 and we were so very excited to be blessed with him. When he was born he was perfect in every way. No jaundice or problems. By the time he was 6 weeks old, we noticed the corners of his eyes were yellow. We took him to the doctor and they did a bilirubin on him. It came back elevated, but the doctor wanted to watch him over the next 2 weeks. At Hunter's 2 month visit, our pediatrician sent Hunter for lab work because of the jaundice. Hunter's liver labs came back elevated so she decided to send us to a pediatric gastroenterologist. This all happened the week of Thanksgiving.
We saw the pedi gastro on December 5 and he sent us to have more lab work and tests done. December 12 was the day our lives changed forever. Hunter was diagnosed with alpha-1 antitrypsin deficiency. It turns out that my husband and I are both carriers of the disease and never knew it. We had a 1 in 4 chance of having an Alpha child. Hunter was our only one, his sisters and brothers are all carriers but do not have the disease. He told us that Hunter's Alpha-1 level was 37 and normal is 90-200. He also said the only cure was a liver transplant but that he felt Hunter would be okay with vitamins and ursodiol. We were in shock. We had never heard of Alpha-1 and didn't want to believe the doctor. He decided to send us to the transplant team just to have him evaluated. When we saw the hepatologist in January of 2003, he felt Hunter would be a patient he would follow and he should be okay. We were so excited and relieved. We went home to begin our life with an Alpha child.
For the most part, February was a good month, until the end. We noticed his stomach was getting extremely large and grew concerned. After seeing our pedi again, she said that he had fluid on his stomach (ascites) and to consult the transplant team. We saw the hepatologist again on March 5. We knew the minute we saw the doctor that he was very concerned. He said Hunter indeed had fluid on his stomach and his lack of interest in eating was due to the liver beginning to fail. He sent us home with diuretics in hopes that the fluid would come off. It never did and a week later Hunter was admitted for ascites and was to be listed for a liver transplant. The doctors were also concerned with Hunter's size. He was very little and they wanted to get some weight on him before the transplant. Also by this time, he was so yellow he was almost green. He even cried yellow tears. It was so hard to see our baby like this. We were in the hospital for 2 weeks and through those 2 weeks, it was a battle to get him to gain an ounce. They eventually put a feeding tube in and we were praying for the weight to come on. We were sent home March 26 in hopes that Hunter would begin to thrive at home. We anxiously waited for the phone to ring.
We were only home a week when the transplant team decided it was time to list him Status 1. They felt if he did not receive a liver in a matter of days he would pass away. He was admitted and they decided to put in a central line to continue to try to put weight on him. That night we received a phone call that they had a liver for Hunter and the next morning he was in for his transplant. We were so very excited and grieved at the same time. How hard it was to celebrate knowing that another family was losing their baby. The doctors said the surgery was perfect and went smoothly. He was sent to the PICU and the first time we saw him it was quite overwhelming. Tubes, IV's, and he was so swollen it was very disturbing. We knew that this was a step in the right direction, though, and we would again have our baby in our arms.
The next day was not so good. The doctors could not find blood flow through the portal vein. We grew very concerned, as did the doctors. They took him in for another surgery and said there was a blood clot. The blood flow to the liver had been cut off too long and the liver was beginning to fail. Hunter was immediately re-listed Status 1. The weekend was very rough. There were good times and then really bad times. We felt as though we were on a horrible roller coaster and couldn't get off. Beginning on Sunday night, Hunter's ammonia level began to rise. It continued to climb into Monday and the doctors wanted to do another surgery to try to get the ammonia out of his blood. He pulled through that surgery great and we were so uplifted and continued to wait for a phone call saying there was another liver.
We finally did receive the call on Tuesday. We were back on the roller coaster again. Hunter never woke from the surgery on Monday and the doctors did a CAT Scan of his brain to make sure he was okay. The results were not good. It showed that he had fatal damage to his brain from the ammonia level. They told us that we would have to take him off the ventilator; that they could do nothing more for him. Hunter was in our arms when the ventilator was turned off. He passed away as we were singing "Jesus Loves Me." We sang that to him so often and he loved to hear us sing to him. I had even made up a song for him called the LaLa song. Our youngest daughter nicknamed him LaLa.
I have never seen so many doctors and nurses as touched by someone as they were by our little Hunter. I can also say that there was not a dry eye in the PICU. Through our sorrow, we met some of the greatest people we have ever had the chance to know. Hunter's doctors and nurses were so caring and compassionate. Hunter's case was a very quick moving case. Many doctors told us they have never seen an Alpha case go so fast. He was only 6 1/2 months old when he passed away. Hunter touched more people than we will ever begin to know and we can only pray that his story will be one that people can learn from and save more little lives. We pray that more people will become organ donors and that there will be screening of newborns for Alpha-1. It is a minor blood test and should be known immediately so doctors can follow each patient.
Thank you so much for reading of our little Hunter. He will forever be a part of our lives.
Kallie Sue ~ August 2, 2002 - February 22, 2004
Kallie Sue was 18 months old when she passed away after complications due to a liver transplant. I'll never forget how excited and scared we where when we got the call on February 19, 2004. The closer we got to the hospital, the more nervous we got. It was like she knew it was her time to go and she wanted to spend EVERY second with me. When I would put her down she would cry like crazy-all I would have to do is pick her up and she was happy as could be.
Then at 4 p.m. on the February 20th it was time to give my angel one last kiss while she was conscious. I kissed her, told her I loved her, and told her I would see her after the surgery with a new liver. Her transplant took about 7 hours, seven LONG hours. When the doctors came out and said the she went through the transplant all right it was like a weight had been lifted off of our chests. It wasn't until the next day that they realized that there was a kink in Kallie's main artery. They went back to surgery to try to repair the kink. I'll never forget when they brought her back the second time the nurses said she was out of it completely, and about that time her little eyes opened long enough to make sure we were there and then they closed again. That was the last time we saw her beautiful eyes.
The next day the artery was kinking again. By this time her kidneys where failing so they took her back to surgery and put her on kidney dialysis. I think this procedure took longer then the actual liver transplant. The doctors also came out and told us they needed to take her liver because it was failing and taking up what energy she has left. Kallie didn't make it to surgery the third time. She passed away at 2:32 a.m. on February 22, 2004. Kallie Sue was a beautiful angel on earth with the most gorgeous red hair and charming smile. And now she is a beautiful angel in heaven.
I remember Jayli's Grandma wrote to me after Jayli passed away. She said something I'll never forget... that Jayli probably met Kallie at heaven's gate and they where dancing and singing together. That just really touched me and made me feel a little better. At least I can feel as though Kallie was met at the gate by a little girl who knew what she was going through and could relate with Kallie in some ways.
Kallie Sue will always be our little angel and the light of our lives. Kallie, we miss you more and more every day. We love you "Little Red.
By her mom, Emily
Robert Michael Beard ~ July 28, 1998 - October 17, 2000
Robert was two years old when he passed away. He was diagnosed at nine months old with a rare blood disease called Langerhans cell histiocytosis, which caused his liver to stop working. He finally got a new liver on July 24, 2000, just four days before his second birthday. A virus took over his body since he had no immune system from the chemotherapy he had been taking for over a year. He ended up with lymphoproliferative disease, which his doctors called a form of lymphoma cancer. He fought so long to overcome the Langerhans cell histiocytosis only to be taken from us because of something totally different.
Robert stayed at Children's Medical Center from June 2000 until October when he passed away. I applaud all the doctors, nurses, and the whole staff at the hospital for taking such great care of him. Without them, he would not have been here as long as he was. He was such a strong little guy and even had the nickname "Little Man." He handled everything that came his way a lot better than most adults do or can. Because of him there are more doctors in the world who know more about Langerhans cell histiocytosis and more doctors working toward a cure.
Robert is in my thoughts everyday. His big brother, Tyler, and I miss him so very much.
By his mother, Heather Nix
Sarah ~ October 10, 2001- January 15, 2003
What Sarah couldn't say, she told us in her own special way.
Her fake cough heard into the hallway said,
"Hey I want you to come play"
To see the TV she would lean and stretch around you,
As if to say, "Excuse me, but you're blocking my view!"
There were times when she did seem scared,
She'd look right into your eyes with hers all tear-filled,
And we heard, "Please, I need to be cuddled,
feeling you close eases my pain,
I want to be held until I feel happy and you feel the same."
She'd sit at the desk and meet all that came,
her great big grin said, "Hi! What's your name?"
She loved to make us smile with that tilt of her head.
Some days she would lay there laughing and
bouncing her bottom right off the bed,
And at that moment it seemed like she said,
"This is my life and I like it just fine,
I'll always be your friend and thank you for being mine."
Now Sarah has left this world that we know.
She is in our thoughts everyday.
If we listen with hearts we are sure to hear her say,
"I'm sorry I left you behind; I just had to go,
but I am all-better now and my halo has a beautiful glow."
Sarah was born on October 10, 2001. She was diagnosed with short gut syndrome and at 5 months of age was placed on the transplant list for a liver and small bowel at Children's Hospital in Pittsburgh. But time ran out for our Sarah and she never received the organs she needed. On January 15, 2003, she went to be in Heaven. This is a poem written by one of her nurses at the Janet Weis Children's Hospital in Danville, PA. All who knew Sarah loved her and will miss her very much.
By her mother, Colleen