Haley's Liver Disease Quest
Donation protected
Haley was born in fall 2014 and released from the hospital as a healthy, thriving baby. Over the next few weeks we noticed Haley's skin color change from a healthy pink to yellow. Soon after, the whites of her eyes also yellowed and looked as though someone used a highlighter on them. She no longer looked or acted like the baby that we brought home from the hospital. Haley slept all the time, even through the entire night at just three weeks old. We brought Haley to her pediatrician for scheduled and unscheduled appointments, pushed for additional testing, and each time we asked about her yellowing, we were reassured that the jaundice would subside.
On the day before her two month appointment, we took her back to her pediatrician and demanded a second opinion. The second doctor immediately identified a potential liver problem and ordered more tests. After many viles of blood were taken that night, we spent the next day in the hospital getting ultra sounds, CAT scans, and more blood work in order to give the team at Johns Hopkins as much information as possible before we arrived. Nothing could have prepared us for the heartache that we felt and continue to feel each day knowing that our baby is sick. Once we arrived at Hopkins, Haley underwent her first surgery - a liver biopsy. The biopsy showed extensive liver damage and she was then scheduled for her Kasai procedure.
Over those 8 days at John's Hopkins, we learned that Haley was born with a rare chronic liver disease called biliary atresia. When Haley is having a well day, her smile lights up an entire room and makes you forget for that moment what challenges she and our family will have to face. By the time she was two months old, she had undergone two major surgeries. Her gallbladder, bile ducts, and part of her small intestine were removed. Haley has a large scar that goes across her abdomen.
Haley has just completed her evaluations to make sure that she is strong enough for her liver transplant. Her Daddy will be her living donor and will be giving her 20-30% of his liver that will grow with her. As much as my heart is broken that my baby is sick and needs a transplant, I know that the transplant will make her well. She will no longer have yellow eyes or skin, a distended belly, or an enlarged liver and spleen, that make playtime, eating, and everday activities uncomfortable.
No parent should ever have to walk their child into an OR and lay her down on the table while saying "I Love You" over and over again so that it is the last thing she hears before she is put to sleep. We have already done this twice and will have to do it again in October when Haley has her liver transplant.
This diagnosis has been not only a huge emotional strain on my family but also a growing financial one. When your child is sick your entire focus is getting and keeping her well until the day of the transplant. I know that my husband worries about the expenses and missing work, yet these things seem so trivial in comparison to our daughter's health.
Although, he tries not to burden me with the additional worry, I know he thinks about this constantly. We are very fortunate to have good insurance at this time. Haley has qualified for Medicaid but only in the state of VA, therefore Medicaid will not cover any additional bills for the transplant, hospital, or doctor appointments at Johns Hopkins.
Our lives will never be the same. We will never get upset over spilled milk or failed routines and schedules. We have a new outlook on life and try to cherish the smallest of moments with our girls.
Haley is just shy of 9 months old...crawling, laughing, and enjoying her time with her sister and family. Even as her 8in scar across her abdomen fades, Haley scratches her ears, neck, and tummy because of the bile build-up in her body that her liver cannot process fast enough. If we are fortunate, in 3 months she can receive her 1-year-old immunizations - the last set of live vaccines that she'll ever be able to receive. Once Haley receives her liver transplant, she will be immuno-suppressed and not able to receive (or be around) live immunizations and viruses. This basically means that Haley is so susceptible to bacteria and infection that she should not be exposed to people that receive the nasal flu vaccine because it is a live virus.
As her parents, we still struggle to balance trying to make her everyday as normal as possible but know the struggles that are to come and the challenges that post-transplant will hold. She will be on anti-rejection medications for the rest of her life and we have been told that she will most likely need another liver transplant in her twenties or thirties.
Haley knows hospitals, bloodwork, medicines, and doctor appointments all too well. This is now the new normal for our family. Each day, it is a struggle to put aside thinking about what is to come and knowing that you can't do anything about it but pray for her health, uneventful recovery, and that her body will accept her Daddy's liver for many years.
Today, Haley started clapping her hands for the first time. Her sister pilots spoonful after spoonful of baby food toward Haley, complete with propeller sounds of an airplane coming in for a landing, to get Haley interested in food. With her gummy, 2-tooth smile, most people would never believe that Haley is between her first liver surgery and a liver transplant.
On the day before her two month appointment, we took her back to her pediatrician and demanded a second opinion. The second doctor immediately identified a potential liver problem and ordered more tests. After many viles of blood were taken that night, we spent the next day in the hospital getting ultra sounds, CAT scans, and more blood work in order to give the team at Johns Hopkins as much information as possible before we arrived. Nothing could have prepared us for the heartache that we felt and continue to feel each day knowing that our baby is sick. Once we arrived at Hopkins, Haley underwent her first surgery - a liver biopsy. The biopsy showed extensive liver damage and she was then scheduled for her Kasai procedure.
Over those 8 days at John's Hopkins, we learned that Haley was born with a rare chronic liver disease called biliary atresia. When Haley is having a well day, her smile lights up an entire room and makes you forget for that moment what challenges she and our family will have to face. By the time she was two months old, she had undergone two major surgeries. Her gallbladder, bile ducts, and part of her small intestine were removed. Haley has a large scar that goes across her abdomen.
Haley has just completed her evaluations to make sure that she is strong enough for her liver transplant. Her Daddy will be her living donor and will be giving her 20-30% of his liver that will grow with her. As much as my heart is broken that my baby is sick and needs a transplant, I know that the transplant will make her well. She will no longer have yellow eyes or skin, a distended belly, or an enlarged liver and spleen, that make playtime, eating, and everday activities uncomfortable.
No parent should ever have to walk their child into an OR and lay her down on the table while saying "I Love You" over and over again so that it is the last thing she hears before she is put to sleep. We have already done this twice and will have to do it again in October when Haley has her liver transplant.
This diagnosis has been not only a huge emotional strain on my family but also a growing financial one. When your child is sick your entire focus is getting and keeping her well until the day of the transplant. I know that my husband worries about the expenses and missing work, yet these things seem so trivial in comparison to our daughter's health.
Although, he tries not to burden me with the additional worry, I know he thinks about this constantly. We are very fortunate to have good insurance at this time. Haley has qualified for Medicaid but only in the state of VA, therefore Medicaid will not cover any additional bills for the transplant, hospital, or doctor appointments at Johns Hopkins.
Our lives will never be the same. We will never get upset over spilled milk or failed routines and schedules. We have a new outlook on life and try to cherish the smallest of moments with our girls.
Haley is just shy of 9 months old...crawling, laughing, and enjoying her time with her sister and family. Even as her 8in scar across her abdomen fades, Haley scratches her ears, neck, and tummy because of the bile build-up in her body that her liver cannot process fast enough. If we are fortunate, in 3 months she can receive her 1-year-old immunizations - the last set of live vaccines that she'll ever be able to receive. Once Haley receives her liver transplant, she will be immuno-suppressed and not able to receive (or be around) live immunizations and viruses. This basically means that Haley is so susceptible to bacteria and infection that she should not be exposed to people that receive the nasal flu vaccine because it is a live virus.
As her parents, we still struggle to balance trying to make her everyday as normal as possible but know the struggles that are to come and the challenges that post-transplant will hold. She will be on anti-rejection medications for the rest of her life and we have been told that she will most likely need another liver transplant in her twenties or thirties.
Haley knows hospitals, bloodwork, medicines, and doctor appointments all too well. This is now the new normal for our family. Each day, it is a struggle to put aside thinking about what is to come and knowing that you can't do anything about it but pray for her health, uneventful recovery, and that her body will accept her Daddy's liver for many years.
Today, Haley started clapping her hands for the first time. Her sister pilots spoonful after spoonful of baby food toward Haley, complete with propeller sounds of an airplane coming in for a landing, to get Haley interested in food. With her gummy, 2-tooth smile, most people would never believe that Haley is between her first liver surgery and a liver transplant.
Organizer
Amber Morris
Organizer
Ashburn, VA