Jacob’s Fund
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“Super Hero Fantasy” – Now Available on MP3
The birth of our son Jacob, and the challenges we’ve faced with his Congenital Heart Defect have truly inspired us as a family. During our stay at Boston Children’s Hospital, I witnessed the most amazing doctors and nurses who cared for our son and comforted us as a family. I also discovered how 1 in every 125 children is born with a heart defect. You never know until it happens to you! It occurred to me how everyone who surrounded Jake, from family, friends, and neighbors to everyone involved with his medical care needed to step up and almost become like superheroes to handle this most delicate challenge.
That notion became a new song that I wrote while sleeping next to Jacob in the hospital called “Super Hero Fantasy”, and the will to help future children and families became a mission to raise money for this cause.
Please consider donating to “Jacob’s Fund”, where 100% of the profits will go to the Children’s Hospital Trust Boston and research for CHD. You can donate as little or as much as you like. Once you donate, I will recognize your kind generosity by emailing you the MP3 of “Super Hero Fantasy” for you to enjoy and share with others who need inspiration and comfort. Our hope is that, ”Super Hero Fantasy” will inspire you in your life, and rest assured that your contribution will some day create cures for children just like Jacob.
A special THANK YOU to my friends Alex Krepkikh and Roland Audette for their fine musicianship on this tune. Roland did a fantastic job as always playing drums, and Alex was outstanding as he produced, mixed, mastered, and also performed on this project.
Super Hero Fantasy (SAMPLE)
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And now, Jacob’s Story…
(In the words of my wife Jayna, prior to Jacob’s birth)
March 20, 2009 was a typical day until, at 32 weeks, I started bleeding and was rushed to the hospital via ambulance.
It stopped pretty quickly and I had no other major issues, but in trying to figure out what had happened, they discovered Jacob had a critical heart defect during an ultrasound. After many tests, the diagnosis was critical aortic stenosis withother complications. His left ventricle was dilated with a thin wall and a lot of scar tissue, in addition, his mitral valve was not functioning and his atrial septum was very small. In short, only half of his heart was working, the right side which does all the work in utero. Once he was born, his left side was not going to be able to take over. Jacob’s heart looked very similar to Hypoplastic Left Heart Syndrome and would be treated as such. The most popular treatment would be three staged open heart surgeries. One at birth, one at 4-6 months, and one at 2-3 years old. Needless to say, we were devastated. The only bright light was that if I had not had the issue, this would not have been caught before his birth and his chances would have been much more slim. Jacob is a strong boy and it is going to be a long and difficult journey, but we will all be better people for having him in our lives.
Jacob was born on May 11th at 4pm, and he weighed 8 lbs. Within minutes of being born, Jacob was rushed to the NICU to be stabilized for his trip across the bridge to Boston Children’s Hospital. He would spend several days in the CICU (Cardiac Intensive Care Unit) where some of the most amazing doctors and nurses in the world reside. After their evaluation, they transported Jake down to the catheterization lab where they performed a balloon dilation of his aortic valve. We were hoping that if they inflated a balloon and opened the damaged valve that his left ventricle would start to pump. If not, we were looking at several open heart surgeries to make up for the lost ventricle.
Miracles do happen, and prayers do get answered as his left ventricle started pumping. It was not nearly good enough to sustain his blood flow, but it was a step in the right direction. From there, they monitored him closely as he recovered. Over the next couple of weeks, his ventricle slowly improved and his Cardiologist, Dr. Gerald Marx, now officially a hero to our entire family, basically said, “comb his hair and take him home.” Clinically, Jacob looked great, and was performing all of the ‘normal’ baby functions. We knew that his aortic valve had issues, but we’d cross that bridge when we got there.
After a couple of months, Jacob was growing and doing very well, and then on July 23rd, we crossed that bridge. After a routine echo-cardiogram that we expected to check out fine, they found a problem. The pressure gradient across his aortic valve was up to a level of 90. They like to see numbers in the 20’s. The good news was that his left ventricle was functioning almost normal, but it was pushing more blood flow through a valve with a small opening. So, that afternoon, to our surprise, they admitted Jake for another procedure.
The next step was balloon dilation just like he had the evening he was born. After the surgery, they confirmed that his gradient was down to 45. They would have liked to see numbers in the 20’s, but we were happy cutting the problem in half. The next morning, they performed another echo-gram before sending us home which was routine procedure. We were basically getting comfortable with the idea of needing more these dilations over time to keep working the valve. A couple of days in the hospital and then home… not bad. Then the next surprise: the gradient was right back up to 85 the next morning, so the procedure did not work.
At this point we are still monitoring his valve with echo-grams, and the last gradient was down as low at 75, but it’s still a dangerous level over time. If nothing changes with this damaged valve we are looking at a couple of options. One: performing a valve repair. Two: open heart surgery replacing his aortic valve with his own pulmonary valve. Obviously, we prefer not to have to go that route, but we believe in his doctor and the cardiac team in Boston: they are truly the best. We know the road with Jacob may be bumpy from time to time, but his presence in our lives and the joy he brings to our family will prevail. Our daughters, Delaney and Jocelyn, are just in love with him, and they are constantly pulling for his little heart to heal.
Being a song writer, I was moved by the entire experience with Jacob like I have never been moved before. I kept thinking about how everyone in the mix, from parents and friends to the doctors and nurses at Boston Children’s Hospital need to become like superheroes in many regards. As I slept next to Jacob during his hospital stay, I started writing and a song emerged called “Superhero Fantasy.” 100% of the profits from all downloads and additional donations will go to the Boston Children’s Trust and research for CHD (Congenital Heart Defects). 1 in 125 children are born with CHD, and not nearly enough money is funneled towards that research. I will continue to share Jacob’s path with everyone in my network, and I’m hopeful you will help me spread the word to raise money for this important cause. God Bless little Jacob!
2/23/2010
Jacob is now going on 10 months old and doing VERY well. His next appointment will be when he turns one year old in May when they will conduct another sedated echo. We know that we are far from being out of the woods, but so far, Jacob’s aortic valve is holding up. The next big test will be when he starts walking… which will be happening very soon. Stay tuned!
“Super Hero Fantasy” Donnie Wilson Music – 2009
“Super Hero Fantasy” Donnie Wilson Music – 2009