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Brynley Layken Shamp ...
Born on March 17, 2016. During the delivery things went very wrong and we almost lost her, but she pulled through and her father Andrew and I finally got to hold and lay eyes on our daughter for the first time. Needless to say it was love at first sight for both of us and we remained on our adrenaline high, until the doctors came back from Brynleys discharge physical and diagnosed her with Bicuspid Aortic Valve Disease, a heart murmur, aortic valve stenosis, and aortic valve regurgitation. As new parents we had no idea what any of this ment or how serious the disease was so the doctor began to explain. Brynleys aortic valve ( one of the main valves in your heart) was closing ( aortic stenosis is the medical term for this condition and brynleys was 20% closed at birth). She was born with only two leaflets in her aortic valve where there should be three (bicuspid aortic valve disease is the medical name for this) and this was causing blood that should be leaving her heart and carrying oxygen to vital organs in her body such as the brain and lungs to leak back into heart instead of flowing out to where it needed to go (blood flowing back into her heart that should be leaving her heart is called aortic valve regergitation). Brynleys heart is working and pumping two times as hard or more , than average persons, which can cause her left ventrical of her heart to thicken causing even more potentially dangerous or fatal problems and permanent damage. They told us to watch for certain signs and symptoms that would indicate even further closing of her aortic valve. Andrew and myself barley slept for weeks on end because we were constantly paranoid of something happening to her. From Waking up numerous times an hour to make sure she was still breathing throughout the night, to listening to her breathing so we could learn the average pace, incase her breathing started to increase (meaning her body wasn't getting the oxygen it was supposed to so faster breathing would make up for that these were two major things to watch for). We tried to prepare ourselves for what we would witness and watch our daughter go through from echo and EKG tests on her heart to possibly someday surgery... What we didn't prepare for was how soon "someday" would be for us. we had brynleys first follow up appointment after birth and we learned that instead of 20% closed it was now about 50% closed and instead of having check ups monthly we now had follow ups at geisinger Danville every week. The doctors started talking to us about surgery options, valve replacements both mechanical and natural, and valvuloplasty.
Valvuloplasty- a procedure where they would put brynley under anesthesia and enter the main artery in her groin go through that artery into her aortic valve with a tiny catheter then send a balloon up through that catheter and then once inside her aortic valve inflate the balloon In tiny incrimments in hopes of opening her valve a decent amount without causing too much regergitation. ( too much regergitation or damage to the valve require immediate open heart surgery) We didn't feel comfortable enough with what we were told so we went to Hershey children's heart group for a second opinion. At first doctors had different opions but then after tests were run on brynleys heart a couple of times they ultimately reached the same conclusion. After many appointments Brynleys valve closed up to 75% and remained there for two months. This was the best news we had received in a while and we began to relax and feel comfortable instead of constantly worried about things getting any worse. Not to mention they were trying to postpone any procedure as long as they could to allow brynley to grow as much as possible. Her valve being 75% closed bought brynley two months worth of time but on August 17, 2016 that time ran out. At that appointment at Hershey children's heart group we learned Brynleys valve was now 88% closed and peaks at a full 100%. We were told she needs a procedure within 2-4 weeks at the very latest. As a mom and dad this is the type of thing you have nightmares about. Our eyes swelled up with tears and devistation ran over our bodies freezing our body, mind, and lips as we just stared at the doctor while he went on to tell us about valvulplasty. When we were finally able to walk out of the echo and EKG room we got in the truck and remained silent the whole way home. At home we both came to an agreement we were going to do anything we had to to make sure children's hospital of Philadelphia was the hospital that was going to fix Brynleys heart. So I immediately got in contact with them and a week later we found out they are in fact going to do brynleys procedure and we will have to travel down there the day befor the day of her surgery for them to run their own echos and EKG tests on her heart. we will have many follow up appointments after that so we will be staying in a hotel near the hospital except for the one night brynley will be staying over night at CHOP. In the mean time we were made aware that andys company was looking at a layoff soon which ment he wasn't going to be able to draw unemployment due to not enough time built up to open a new claim. I was supposed to go back to work when he reached the point of lay off but now because of this will not be able to until some time after Brynleys surgery. Also we had to move into a new house because our landlord had recently passed away and his family decided to sell the one we were currently living in so our rent increased a couple hundred dollars. So I'm asking anyone who reads this to please donate anything financially possible to help my family in this time of need. If no money donation is possible for you I understand that so instead of donating money please just donate a prayer for my daughter each night you go to bed. Thank you to each and every one of you that take the time to read this and that donate in anyway that you can.
Love and appreciation from the shamp family
Born on March 17, 2016. During the delivery things went very wrong and we almost lost her, but she pulled through and her father Andrew and I finally got to hold and lay eyes on our daughter for the first time. Needless to say it was love at first sight for both of us and we remained on our adrenaline high, until the doctors came back from Brynleys discharge physical and diagnosed her with Bicuspid Aortic Valve Disease, a heart murmur, aortic valve stenosis, and aortic valve regurgitation. As new parents we had no idea what any of this ment or how serious the disease was so the doctor began to explain. Brynleys aortic valve ( one of the main valves in your heart) was closing ( aortic stenosis is the medical term for this condition and brynleys was 20% closed at birth). She was born with only two leaflets in her aortic valve where there should be three (bicuspid aortic valve disease is the medical name for this) and this was causing blood that should be leaving her heart and carrying oxygen to vital organs in her body such as the brain and lungs to leak back into heart instead of flowing out to where it needed to go (blood flowing back into her heart that should be leaving her heart is called aortic valve regergitation). Brynleys heart is working and pumping two times as hard or more , than average persons, which can cause her left ventrical of her heart to thicken causing even more potentially dangerous or fatal problems and permanent damage. They told us to watch for certain signs and symptoms that would indicate even further closing of her aortic valve. Andrew and myself barley slept for weeks on end because we were constantly paranoid of something happening to her. From Waking up numerous times an hour to make sure she was still breathing throughout the night, to listening to her breathing so we could learn the average pace, incase her breathing started to increase (meaning her body wasn't getting the oxygen it was supposed to so faster breathing would make up for that these were two major things to watch for). We tried to prepare ourselves for what we would witness and watch our daughter go through from echo and EKG tests on her heart to possibly someday surgery... What we didn't prepare for was how soon "someday" would be for us. we had brynleys first follow up appointment after birth and we learned that instead of 20% closed it was now about 50% closed and instead of having check ups monthly we now had follow ups at geisinger Danville every week. The doctors started talking to us about surgery options, valve replacements both mechanical and natural, and valvuloplasty.
Valvuloplasty- a procedure where they would put brynley under anesthesia and enter the main artery in her groin go through that artery into her aortic valve with a tiny catheter then send a balloon up through that catheter and then once inside her aortic valve inflate the balloon In tiny incrimments in hopes of opening her valve a decent amount without causing too much regergitation. ( too much regergitation or damage to the valve require immediate open heart surgery) We didn't feel comfortable enough with what we were told so we went to Hershey children's heart group for a second opinion. At first doctors had different opions but then after tests were run on brynleys heart a couple of times they ultimately reached the same conclusion. After many appointments Brynleys valve closed up to 75% and remained there for two months. This was the best news we had received in a while and we began to relax and feel comfortable instead of constantly worried about things getting any worse. Not to mention they were trying to postpone any procedure as long as they could to allow brynley to grow as much as possible. Her valve being 75% closed bought brynley two months worth of time but on August 17, 2016 that time ran out. At that appointment at Hershey children's heart group we learned Brynleys valve was now 88% closed and peaks at a full 100%. We were told she needs a procedure within 2-4 weeks at the very latest. As a mom and dad this is the type of thing you have nightmares about. Our eyes swelled up with tears and devistation ran over our bodies freezing our body, mind, and lips as we just stared at the doctor while he went on to tell us about valvulplasty. When we were finally able to walk out of the echo and EKG room we got in the truck and remained silent the whole way home. At home we both came to an agreement we were going to do anything we had to to make sure children's hospital of Philadelphia was the hospital that was going to fix Brynleys heart. So I immediately got in contact with them and a week later we found out they are in fact going to do brynleys procedure and we will have to travel down there the day befor the day of her surgery for them to run their own echos and EKG tests on her heart. we will have many follow up appointments after that so we will be staying in a hotel near the hospital except for the one night brynley will be staying over night at CHOP. In the mean time we were made aware that andys company was looking at a layoff soon which ment he wasn't going to be able to draw unemployment due to not enough time built up to open a new claim. I was supposed to go back to work when he reached the point of lay off but now because of this will not be able to until some time after Brynleys surgery. Also we had to move into a new house because our landlord had recently passed away and his family decided to sell the one we were currently living in so our rent increased a couple hundred dollars. So I'm asking anyone who reads this to please donate anything financially possible to help my family in this time of need. If no money donation is possible for you I understand that so instead of donating money please just donate a prayer for my daughter each night you go to bed. Thank you to each and every one of you that take the time to read this and that donate in anyway that you can.
Love and appreciation from the shamp family