Help Jasper Fight HLHS
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My name is David Burrell and my wife's name is Carrie, we have been married for 17 years. We met while serving in the U.S. Airforce at Pope AFB, NC. We moved to Tennessee in 2006 from Cincinnati, Ohio. She is an Ultrasonographer at an OB/GYN Clinic in Memphis, I am an Network Administrator and Scoutmaster for the local boy scout troop. We have three wonderful children. Devin is 16, Sophia is 14 and Jasper is 4.
Of course, my wife being a sonographer she was watching Jasper's development closely. At 22 weeks she decided to take a quick "peek" at Jasper. Scanning herself was somewhat difficult at times but she just couldn't help taking a look every now and then. While watching his little heart beat she noticed that the ventricles didn't look the same. Her doctor refered her to a specialist at that point, who diagnosed Jasper with HLHS. They both were monitored very closely until Jasper's dramatic emergency c-section delivery on 10-29-2011, that only took 10 minutes. I remember that day quite vividly and how that was probably the most terrifying experience of my life.
Jasper is our third child, he weighed 5lbs 4oz and was 18 inches long. Jasper has changed our lives in many ways. He has had to endure more in the first few months of life than most people have had in their entire lives.
Jasper has hypoplastic left heart syndrome (also known as HLHS). In babies with HLHS, the aorta and left ventricle are underdeveloped before birth, and the aortic and mitral valves are either too small to allow sufficient blood flow or are atretic (closed) altogether. In cases of HLHS, the right side of the heart often must pump blood to the body through a patent ductus arteriosus. As the ductus arteriosus usually closes within eleven days after birth, blood flow is severely restricted and eventually cutoff, leading to dangerously low circulation and eventually to shock.
Jasper had his first open heart surgery when he was only six days old. He then spent the next three and a half weeks in the cardiovascular intensive care unit and was discharged on Thanksgiving. After that he was in the hospital two more times because he wasn't gaining weight. He then had to have a feeding tube placed and his gallbladder removed two days before Christmas. We seem to be destined to spend all our holidays in the hospital.
There are two treatments for HLHS, heart transplant and/or a three stage surgery. The staged reconstructive surgery (Norwood procedure almost immediately after birth, Glenn procedure at 3 to 6 months of age, and the Fontan procedure at 3 to 5 years of age). Before 1970 there was not a treatment for this condition. The surgeries are not a permanent fix and he will require treatment for the rest of his life. There are no long-term statistics for children diagnosed with HLHS at this point so every day with him is a gift.
As a result of Jasper's medical condition, he has suffered brain damage that has left him developmentally delayed. He is three years old at this point and he has difficulty communicating with us and talking in general.
Jasper has had his 3rd and hopefully final open heart surgery. As many of you may know heart surgeries and any surgery for that matter are not inherently cheap operations. This coupled with the surmounting medical bills from previous surgeries, doctors visits for the tiniest sniffle, occupational, and physical therapy has put a tremendous financial strain on the family altogether. Because of Jasper's heart condition, we didn't want to leave the Memphis area . We did not want to move away from Lebonheur Children's Medical hospital until his surgeries were at a better stage. This has added another difficulty to our situation as medical bills are now coming due. Carrie even had to change her work schedule to accomodate the care and medical appointments Jasper requires. She took an extended leave of abscence from work during his first year of life that was spent mostly in and out of the hospital.
He is one of the best things that has ever happened to us and you will never meet a happier child. He brings light to our everyday and we are thankful for him and the time we get to spend with him no matter how much it will be.
Of course, my wife being a sonographer she was watching Jasper's development closely. At 22 weeks she decided to take a quick "peek" at Jasper. Scanning herself was somewhat difficult at times but she just couldn't help taking a look every now and then. While watching his little heart beat she noticed that the ventricles didn't look the same. Her doctor refered her to a specialist at that point, who diagnosed Jasper with HLHS. They both were monitored very closely until Jasper's dramatic emergency c-section delivery on 10-29-2011, that only took 10 minutes. I remember that day quite vividly and how that was probably the most terrifying experience of my life.
Jasper is our third child, he weighed 5lbs 4oz and was 18 inches long. Jasper has changed our lives in many ways. He has had to endure more in the first few months of life than most people have had in their entire lives.
Jasper has hypoplastic left heart syndrome (also known as HLHS). In babies with HLHS, the aorta and left ventricle are underdeveloped before birth, and the aortic and mitral valves are either too small to allow sufficient blood flow or are atretic (closed) altogether. In cases of HLHS, the right side of the heart often must pump blood to the body through a patent ductus arteriosus. As the ductus arteriosus usually closes within eleven days after birth, blood flow is severely restricted and eventually cutoff, leading to dangerously low circulation and eventually to shock.
Jasper had his first open heart surgery when he was only six days old. He then spent the next three and a half weeks in the cardiovascular intensive care unit and was discharged on Thanksgiving. After that he was in the hospital two more times because he wasn't gaining weight. He then had to have a feeding tube placed and his gallbladder removed two days before Christmas. We seem to be destined to spend all our holidays in the hospital.
There are two treatments for HLHS, heart transplant and/or a three stage surgery. The staged reconstructive surgery (Norwood procedure almost immediately after birth, Glenn procedure at 3 to 6 months of age, and the Fontan procedure at 3 to 5 years of age). Before 1970 there was not a treatment for this condition. The surgeries are not a permanent fix and he will require treatment for the rest of his life. There are no long-term statistics for children diagnosed with HLHS at this point so every day with him is a gift.
As a result of Jasper's medical condition, he has suffered brain damage that has left him developmentally delayed. He is three years old at this point and he has difficulty communicating with us and talking in general.
Jasper has had his 3rd and hopefully final open heart surgery. As many of you may know heart surgeries and any surgery for that matter are not inherently cheap operations. This coupled with the surmounting medical bills from previous surgeries, doctors visits for the tiniest sniffle, occupational, and physical therapy has put a tremendous financial strain on the family altogether. Because of Jasper's heart condition, we didn't want to leave the Memphis area . We did not want to move away from Lebonheur Children's Medical hospital until his surgeries were at a better stage. This has added another difficulty to our situation as medical bills are now coming due. Carrie even had to change her work schedule to accomodate the care and medical appointments Jasper requires. She took an extended leave of abscence from work during his first year of life that was spent mostly in and out of the hospital.
He is one of the best things that has ever happened to us and you will never meet a happier child. He brings light to our everyday and we are thankful for him and the time we get to spend with him no matter how much it will be.
Organizer
David Burrell
Organizer
Oakland, TN