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Akaila Zimmerman
Akaila Nicole was born May 10, 2001. A day after she was born we found out she had a rare heart defect called Hypoplastic Left Heart Syndrome. This is when the left side of the heart doesn't form completely, and in many instances like Akaila, the aorta and pulmonary arteries are also underdeveloped. Akaila was flown to UVA Medical Center in Charlottesville, Va., where she underwent her first heart catherization at 1 day old.
Three days later Akaila underwent her first open heart surgery called the Norwood by Dr. Irving Kron (a miracle worker!) and was placed on ECMO after surgery. This machine does what her heart would do by pumping blood out of her body, oxygenating it and circulating it back into her body. She was able to come off the ECMO machine 3 days later and eventually went home after a 6 week hospital stay. A few months later Akaila underwent her 2nd open heart surgery at 4 months old and the Hemi-Fontan. After coming home 4 weeks later, she started having trouble getting enough oxygen into her blood. She went back to Charlottesville to get a 3rd heart cath, when led into an emergency open heart surgery, her 3rd in 5 months. She was placed back on the ECMO machine because she was so weak after surgery. She stayed on the ECMO machine for 2 days and then eventually went home after another 5 weeks in the hospital.
Over the next 1 ˝ years Akaila underwent a few more heart caths due to poor oxygenation. At 2 years old she underwent her 4th open heart surgery called the Fontan. This was supposed to be our last one. She recovered well from this surgery and we came home after only 2 weeks. She then started to go into congestive heart failure, which eventually led to the Fontan being taken down in Feb. 2004. This was due to pulmonary vascular disease and pulmonary hypertension that was discovered in Oct. 2003. After this surgery she underwent numerous complications that weren't heart related that kept us in the hospital for 4 months. She developed a GI bleed, a sternal wound infection and several bouts of really bad sepsis that almost killed her. After coming home in May of 2004, she recovered very well and started going to school full-time.
She has since done extremely well. She still has very low saturations in the high 70's-low 80's. She still has the pulmonary hypertension, which inhibits her endurance quite a bit. Her heart function is very good, all things considered. Because of her lung problems, she tends to create extra blood vessels called collaterals that hinders her oxygenated blood from circulating correctly. Because of this she has undergone numerous heart caths to repair these. She has her 10th heart cath scheduled for the end of Feb. 2006. It's unsure exactly what she'll need surgery wise in the future, but we are enjoying and living every day to the fullest right now. We revel in the good days, cry in the bad days, and pray everyday. As long as she is happy and our family is happy, that's all we can ask for!!
Brooke Mackenzie
Brooke's story began in November of 2002 when her parents, Bob and Allison, found out they were expecting a baby. The excitement built as they waited to find out the sex of their new baby. At the 24-week ultra sound, they were told the baby would be a girl. Her name had already been selected and the nursery was practically waiting to be filled. The doctor told Bob and Allison that the baby's heart was not able to be seen well because of her position. This meant that another ultrasound would need to be done in four more weeks. It was explained that this was done because the most common birth defects were congenital heart defects and the doctors liked to know about these birth defects so any special arrangements that needed to be made could be done early. Without much more thought, Brooke's parents went home to await the arrival of their baby girl.
Four weeks later, Allison went back to the doctor for the follow up ultrasound. As the ultrasound drug on, it became apparent that something was not right. The doctor broke the news that the ultrasound revealed some abnormalities that would need to be looked at by a specialist. One week later, a high-resolution ultrasound was done. Bob and Allison met with a geneticist and the doctor who greeted them by saying, "First, let me tell you what is good with your baby." Those were the most heart wrenching words an expecting mother and father could hear because they were going to be followed by a "but". Then, the doctor told them that their little baby was going to have a very hard fight. She was going to be born with a malformation of the stomach and intestines, some of her vertebra were only half formed and that she had a complex heart defect call Hypoplastic Left Heart Syndrome. This defect is fatal without surgical intervention shortly after birth. The doctor told them that as long as the baby stayed in the womb, she was safe, but as soon as she was born, she was going to be fighting for her life.
Scared and determined to fight on her behalf, Bob and Allison took a day to go to the library and research. They scheduled appointments with every doctor they could. They were very fortunate to be matched with a pediatric cardiologist with a real heart for heart babies. Dr. Mary Donofrio became the doctor, encourager and advocate for Brooke and her family before Brooke was even born. So, when Brooke Mackenzie was born at the Medical College of Virginia on June 17, 2003, she was welcomed to this world by her parents, grandparents, aunts, uncles and an operating room full of MCV doctors and nurses. She was rushed to the NICU to be stabilized and for testing. It was six long hours before her parents got to see their tiny baby. They were not able to hold Brooke because of the medical devices monitoring her. Complications from her heart defect arose quickly.
The day after Brooke was born an attempt to open her aorta through a heart catheter did not work. The doctors hoped to operate on Brooke's stomach before they had to operate on her heart. This would reduce the risk of infecting the chest incision with the stomach bacteria. However, that attempt was complicated by Brooke's heart going into congested heart failure sooner than hoped. Her parents got the call at two in the morning that Brooke's condition had worsened, the stomach surgery was cancelled and plans needed to be made. The next morning, Bob and Allison spoke with the doctors and decided that Brooke's best chance was to be transported to The Children's Hospital of Philadelphia where there was a surgeon who specialized in treating complex cases like Brooke's.
The next day, Brooke and her mom were flown in a medical jet to C.H.O.P. Bob had to make the long drive alone. Brooke went in for her first of three heart surgeries on June 23, 2003. That was one of the worst days of Bob and Allison's lives. They met the man, Dr. Thomas Spray, who would perform Brooke's life saving surgeries. He was a tall, soft spoken, man with very large hands. Those hands would delicately work on a heart barely the size of a walnut. After several hours, the surgeon came to tell them Brooke had made it through surgery. This was the first surgery in a three-stage plan for Brooke's heart. Four days later, Brooke underwent stomach surgery. It would still be three weeks before she could try to take a bottle. Progress was slow but steady. Before long, Brooke came home. Her goal was to grow so she could have her next surgery.
Brooke faced many complications and nearly daily trips to one doctor or another for the first six months. Then, at almost seven months, she returned to The Children's Hospital of Philadelphia for her second open-heart surgery. Handing their sweet little baby over to the surgical team did not seem fair. Finally, Dr. Spray came to tell Bob and Allison that Brooke had made it through another successful surgery. Then it was home to help her catch up on the normal baby things. She would continue to be monitored by her pediatric cardiologist pretty closely until she was ready for her third surgery.
It was the spring of 2006 when Brooke's pediatric cardiologist said that she was ready for her third, and hopefully, final surgery. After this, she would have a "designer heart". All of the typical workings of the human heart had to be reworked to make Brooke's heart function as close to normal as possible. On August 25, 2006, Bob and Allison turned their three-year old daughter over to the surgical team one more time. If the first two times were hard, this one was nearly impossible. "Just one more hug." Even now, the tears flow when Allison thinks of that moment. Knowing that it must be done does not make it any easier. Spending another four hours in a waiting room almost seems routine. But, the reality of what Brooke and her family have been through is anything but routine. When Dr. Spray walks in and says those magic words, "Everything went as planned", everyone let out a huge sigh of relief.
Brooke's fight is far from over. She will continue to need medications to help her heart work better. She will continue to be monitored by a cardiologist for life. Because her heart is not fully fixed, and there is no real idea what will happen in the future, Brooke's story is not done. Most doctors believe that a heart that has been through the stages hers has will last about 30 to 40 years. Many insurance companies, including Brooke's, do not cover the medical expenses involved in her treatment. So the families have to carry that burden. These kids are often referred to as million dollar babies, and that does not reflect the value they are to their families. To spend one day with Brooke, is to see what unconditional happiness is. Her special life is worth every penny.
Jameson
As I lay on the exam table and the ultra sound tech squeezes some warm gel on my expanding belly, I look over at my two daughters who are 4 and 7 and squeeze my husband's hand. We are all eager to find out the sex of our newest addition to the family. With two girls already, we were eager to find out if Daddy will get a little boy. The baby is uncooperative. The tech is unable to tell the sex. Our excitement elevates. The tech steps out to get the doctor. Soon the doctor comes back. This is typical. The doctor always comes in after the tech views the baby. He looks at the screen for a long time. I start to get a sick feeling in my stomach. I squeeze my husband's hand harder. The sweat is building between our tightly gripped hands. His panic is beginning to flow to me threw his hand as though our bodies were connected. The doctor speaks…. "This is not good. This is bad." I truly feel like I am going to faint. I look over at my girls who have started to look at a Dr Seuss book and have forgotten about what we are there for. I think to myself. They understand "This is bad." Get them out of here. I don't want them to see me cry. Oh my God! Oh my God! The tech takes my daughters out of the room to the waiting room. The doctor tells us that the baby is missing part of its heart. Missing half its heart! What does this mean? Is the baby dying? Going to live? So many questions. The doctor says he is going to call a pediatric cardiologist from upstairs to come talk to us and explain everything.
We are sitting in the Dr.'s Office and the cardiologist begins explaining everything. Our baby is missing a ventricle. She has Hypoplastic Left Heart Syndrome. To this day, I don't remember that doctor giving us much hope. But I don't remember much from that conversation. The one thing I do remember was we were told to think about aborting the baby.
After many tears and prayers we decided to continue with the pregnancy and do everything we could for our baby. Jameson Carlin Ward was born on October 13, 2006 in Washington DC at Children's National Medical Center. That is the day she began her life and her fight to live. When she was four (4) days old, she had her first open heart surgery. After a grueling four-week roller coaster recovery, she came home to Richmond, Virginia to her two big sisters that had lived over a month without their mommy and daddy. The next couple of months were extremely difficult. Jameson was stable but, by no means, was she a healthy new born. She struggled to eat and thrive. Jameson had her second open-heart surgery on March 1, 2007 at 4 ˝ months. The recovery was much quicker this time. The best part was she was crying, crying because she was hungry and wanted to eat! Every month Jameson has grown stronger. She is now approaching her first birthday and is such a wonderful baby. She sometimes gets winded when she is crawling or moving around but other than that, the scar that is hidden under her shirt is the only proof of what this little girl has been through. Her third, and hopefully final surgery will be in the next six months. We pray that she will continue to grow and gain strength to get through it.
No parent should ever have to go through any of this. More importantly, no parent should ever be told to abort a baby with out the facts. Had we followed the doctor's advice we would not have our beautiful "Little Champion". Parents deserve to believe their child has a chance. Parents deserve to have hope for their baby's future.
Joshua Lemacks
Joshua is an active 4 year old. He was born in June of 2003 with hypoplastic left heart syndrome, a rare and fatal defect, unless treated. Basically, he was missing his left ventricle and his aorta was very narrow. Parents of children with this defect are given three options: they can take their child home to die, they can try for a heart transplant in hopes that a heart will become available soon enough, or their child can undergo three surgeries that will reroute the blood so that the child can survive. Jodi and Mark, Joshua's parents, opted for the surgeries.
Joshua was delivered via c-section, and he went directly to the OR at The Children's Hospital of Philadelphia for his first of three staged surgeries. He did well through the surgery but then developed severe blood infections. He miraculously pulled through, and Jodi and Mark were able to bring Joshua home to Richmond for the first time almost two months later.
Joshua had his second open-heart surgery at 5 ˝ months old, and he went home five days afterwards. He had his third surgery, the Fontan surgery, when he was three. This surgery was particularly hard on the family as they had had over two more years to learn to love Joshua, and they knew there was a possibility he might not come home. However, Joshua also made it through this surgery with a few post-surgery complications called pleural effusions. That kept the Joshua's family in Philadelphia a little longer than they anticipated, but Joshua did fully recover. We do not know what is in Joshua's future. The doctors cannot "fix" his heart. We are hoping that Joshua will not need any other procedures for a long time. In the meantime, he has fun playing with his brothers and making his parents laugh.
Every day with him is a blessing.
Our Stories
Show all storiesHypoplastic Left Heart Syndrome
Akaila Zimmerman
Akaila Nicole was born May 10, 2001. A day after she was born we found out she had a rare heart defect called Hypoplastic Left Heart Syndrome. This is when the left side of the heart doesn't form completely, and in many instances like Akaila, the aorta and pulmonary arteries are also underdeveloped. Akaila was flown to UVA Medical Center in Charlottesville, Va., where she underwent her first heart catherization at 1 day old.
Three days later Akaila underwent her first open heart surgery called the Norwood by Dr. Irving Kron (a miracle worker!) and was placed on ECMO after surgery. This machine does what her heart would do by pumping blood out of her body, oxygenating it and circulating it back into her body. She was able to come off the ECMO machine 3 days later and eventually went home after a 6 week hospital stay. A few months later Akaila underwent her 2nd open heart surgery at 4 months old and the Hemi-Fontan. After coming home 4 weeks later, she started having trouble getting enough oxygen into her blood. She went back to Charlottesville to get a 3rd heart cath, when led into an emergency open heart surgery, her 3rd in 5 months. She was placed back on the ECMO machine because she was so weak after surgery. She stayed on the ECMO machine for 2 days and then eventually went home after another 5 weeks in the hospital.
Over the next 1 ˝ years Akaila underwent a few more heart caths due to poor oxygenation. At 2 years old she underwent her 4th open heart surgery called the Fontan. This was supposed to be our last one. She recovered well from this surgery and we came home after only 2 weeks. She then started to go into congestive heart failure, which eventually led to the Fontan being taken down in Feb. 2004. This was due to pulmonary vascular disease and pulmonary hypertension that was discovered in Oct. 2003. After this surgery she underwent numerous complications that weren't heart related that kept us in the hospital for 4 months. She developed a GI bleed, a sternal wound infection and several bouts of really bad sepsis that almost killed her. After coming home in May of 2004, she recovered very well and started going to school full-time.
She has since done extremely well. She still has very low saturations in the high 70's-low 80's. She still has the pulmonary hypertension, which inhibits her endurance quite a bit. Her heart function is very good, all things considered. Because of her lung problems, she tends to create extra blood vessels called collaterals that hinders her oxygenated blood from circulating correctly. Because of this she has undergone numerous heart caths to repair these. She has her 10th heart cath scheduled for the end of Feb. 2006. It's unsure exactly what she'll need surgery wise in the future, but we are enjoying and living every day to the fullest right now. We revel in the good days, cry in the bad days, and pray everyday. As long as she is happy and our family is happy, that's all we can ask for!!
Brooke Mackenzie
Four weeks later, Allison went back to the doctor for the follow up ultrasound. As the ultrasound drug on, it became apparent that something was not right. The doctor broke the news that the ultrasound revealed some abnormalities that would need to be looked at by a specialist. One week later, a high-resolution ultrasound was done. Bob and Allison met with a geneticist and the doctor who greeted them by saying, "First, let me tell you what is good with your baby." Those were the most heart wrenching words an expecting mother and father could hear because they were going to be followed by a "but". Then, the doctor told them that their little baby was going to have a very hard fight. She was going to be born with a malformation of the stomach and intestines, some of her vertebra were only half formed and that she had a complex heart defect call Hypoplastic Left Heart Syndrome. This defect is fatal without surgical intervention shortly after birth. The doctor told them that as long as the baby stayed in the womb, she was safe, but as soon as she was born, she was going to be fighting for her life.
Scared and determined to fight on her behalf, Bob and Allison took a day to go to the library and research. They scheduled appointments with every doctor they could. They were very fortunate to be matched with a pediatric cardiologist with a real heart for heart babies. Dr. Mary Donofrio became the doctor, encourager and advocate for Brooke and her family before Brooke was even born. So, when Brooke Mackenzie was born at the Medical College of Virginia on June 17, 2003, she was welcomed to this world by her parents, grandparents, aunts, uncles and an operating room full of MCV doctors and nurses. She was rushed to the NICU to be stabilized and for testing. It was six long hours before her parents got to see their tiny baby. They were not able to hold Brooke because of the medical devices monitoring her. Complications from her heart defect arose quickly.
The day after Brooke was born an attempt to open her aorta through a heart catheter did not work. The doctors hoped to operate on Brooke's stomach before they had to operate on her heart. This would reduce the risk of infecting the chest incision with the stomach bacteria. However, that attempt was complicated by Brooke's heart going into congested heart failure sooner than hoped. Her parents got the call at two in the morning that Brooke's condition had worsened, the stomach surgery was cancelled and plans needed to be made. The next morning, Bob and Allison spoke with the doctors and decided that Brooke's best chance was to be transported to The Children's Hospital of Philadelphia where there was a surgeon who specialized in treating complex cases like Brooke's.
The next day, Brooke and her mom were flown in a medical jet to C.H.O.P. Bob had to make the long drive alone. Brooke went in for her first of three heart surgeries on June 23, 2003. That was one of the worst days of Bob and Allison's lives. They met the man, Dr. Thomas Spray, who would perform Brooke's life saving surgeries. He was a tall, soft spoken, man with very large hands. Those hands would delicately work on a heart barely the size of a walnut. After several hours, the surgeon came to tell them Brooke had made it through surgery. This was the first surgery in a three-stage plan for Brooke's heart. Four days later, Brooke underwent stomach surgery. It would still be three weeks before she could try to take a bottle. Progress was slow but steady. Before long, Brooke came home. Her goal was to grow so she could have her next surgery.
Brooke faced many complications and nearly daily trips to one doctor or another for the first six months. Then, at almost seven months, she returned to The Children's Hospital of Philadelphia for her second open-heart surgery. Handing their sweet little baby over to the surgical team did not seem fair. Finally, Dr. Spray came to tell Bob and Allison that Brooke had made it through another successful surgery. Then it was home to help her catch up on the normal baby things. She would continue to be monitored by her pediatric cardiologist pretty closely until she was ready for her third surgery.
It was the spring of 2006 when Brooke's pediatric cardiologist said that she was ready for her third, and hopefully, final surgery. After this, she would have a "designer heart". All of the typical workings of the human heart had to be reworked to make Brooke's heart function as close to normal as possible. On August 25, 2006, Bob and Allison turned their three-year old daughter over to the surgical team one more time. If the first two times were hard, this one was nearly impossible. "Just one more hug." Even now, the tears flow when Allison thinks of that moment. Knowing that it must be done does not make it any easier. Spending another four hours in a waiting room almost seems routine. But, the reality of what Brooke and her family have been through is anything but routine. When Dr. Spray walks in and says those magic words, "Everything went as planned", everyone let out a huge sigh of relief.
Brooke's fight is far from over. She will continue to need medications to help her heart work better. She will continue to be monitored by a cardiologist for life. Because her heart is not fully fixed, and there is no real idea what will happen in the future, Brooke's story is not done. Most doctors believe that a heart that has been through the stages hers has will last about 30 to 40 years. Many insurance companies, including Brooke's, do not cover the medical expenses involved in her treatment. So the families have to carry that burden. These kids are often referred to as million dollar babies, and that does not reflect the value they are to their families. To spend one day with Brooke, is to see what unconditional happiness is. Her special life is worth every penny.
Jameson
As I lay on the exam table and the ultra sound tech squeezes some warm gel on my expanding belly, I look over at my two daughters who are 4 and 7 and squeeze my husband's hand. We are all eager to find out the sex of our newest addition to the family. With two girls already, we were eager to find out if Daddy will get a little boy. The baby is uncooperative. The tech is unable to tell the sex. Our excitement elevates. The tech steps out to get the doctor. Soon the doctor comes back. This is typical. The doctor always comes in after the tech views the baby. He looks at the screen for a long time. I start to get a sick feeling in my stomach. I squeeze my husband's hand harder. The sweat is building between our tightly gripped hands. His panic is beginning to flow to me threw his hand as though our bodies were connected. The doctor speaks…. "This is not good. This is bad." I truly feel like I am going to faint. I look over at my girls who have started to look at a Dr Seuss book and have forgotten about what we are there for. I think to myself. They understand "This is bad." Get them out of here. I don't want them to see me cry. Oh my God! Oh my God! The tech takes my daughters out of the room to the waiting room. The doctor tells us that the baby is missing part of its heart. Missing half its heart! What does this mean? Is the baby dying? Going to live? So many questions. The doctor says he is going to call a pediatric cardiologist from upstairs to come talk to us and explain everything.
We are sitting in the Dr.'s Office and the cardiologist begins explaining everything. Our baby is missing a ventricle. She has Hypoplastic Left Heart Syndrome. To this day, I don't remember that doctor giving us much hope. But I don't remember much from that conversation. The one thing I do remember was we were told to think about aborting the baby.
After many tears and prayers we decided to continue with the pregnancy and do everything we could for our baby. Jameson Carlin Ward was born on October 13, 2006 in Washington DC at Children's National Medical Center. That is the day she began her life and her fight to live. When she was four (4) days old, she had her first open heart surgery. After a grueling four-week roller coaster recovery, she came home to Richmond, Virginia to her two big sisters that had lived over a month without their mommy and daddy. The next couple of months were extremely difficult. Jameson was stable but, by no means, was she a healthy new born. She struggled to eat and thrive. Jameson had her second open-heart surgery on March 1, 2007 at 4 ˝ months. The recovery was much quicker this time. The best part was she was crying, crying because she was hungry and wanted to eat! Every month Jameson has grown stronger. She is now approaching her first birthday and is such a wonderful baby. She sometimes gets winded when she is crawling or moving around but other than that, the scar that is hidden under her shirt is the only proof of what this little girl has been through. Her third, and hopefully final surgery will be in the next six months. We pray that she will continue to grow and gain strength to get through it.
No parent should ever have to go through any of this. More importantly, no parent should ever be told to abort a baby with out the facts. Had we followed the doctor's advice we would not have our beautiful "Little Champion". Parents deserve to believe their child has a chance. Parents deserve to have hope for their baby's future.
Joshua Lemacks
Joshua was delivered via c-section, and he went directly to the OR at The Children's Hospital of Philadelphia for his first of three staged surgeries. He did well through the surgery but then developed severe blood infections. He miraculously pulled through, and Jodi and Mark were able to bring Joshua home to Richmond for the first time almost two months later.
Joshua had his second open-heart surgery at 5 ˝ months old, and he went home five days afterwards. He had his third surgery, the Fontan surgery, when he was three. This surgery was particularly hard on the family as they had had over two more years to learn to love Joshua, and they knew there was a possibility he might not come home. However, Joshua also made it through this surgery with a few post-surgery complications called pleural effusions. That kept the Joshua's family in Philadelphia a little longer than they anticipated, but Joshua did fully recover. We do not know what is in Joshua's future. The doctors cannot "fix" his heart. We are hoping that Joshua will not need any other procedures for a long time. In the meantime, he has fun playing with his brothers and making his parents laugh.
Every day with him is a blessing.
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