Mending Jacob's Broken Heart
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January 5, 2018, we found out we are going to have a little boy, unfortunately right after that the doctor informed us that he has a severe congenital heart defect. To say this news was devastating would not start to explain the pain and sorrow. The obstetrician quickly set us up to see a pediatric cardiologist to get a firm diagnosis and begin planning what we could do to help our child. Between doctors appointments we choose the name Jacob for our son, we didn't want to refer to him as a fetus. He is our son that we already love so much.
The very next week we were in the pediatric cardiologist's office for an fetal echo cardiogram. The doctor explained that Jacob has hypoplastic left heart syndrome with aortic atresia. Which mean his aortic valve was almost completely fused shut causing blood to back up and over stretch his left ventricle. The doctor then went over that there are surgeries that can be completed after birth to compensate for this defect and in 85% of the case the children survive. He also said there is a surgery that can be completed in utero, however, he wasn't sure we were candidates. He said he would send our information up to Boston Children's Hospital anyway since he does not do this experimental surgery and the protocols are always changing.
One week later we get a call saying that Boston had reviewed our case and that they believed we were candidates and would like the pediatric cardiologist to complete another echo cardiogram with focus on specific images and measurements. I rushed into the doctor's office and had those fetal scans done and that night I receive a call from the Cardiologist in Boston going over the procedure, the risks and the benefits. We took the week end to think these things over and sent a few questions to the doctor, by Monday we had decided that we wanted to do this to give Jacob a better chance of survival.
Thus began what felt like a very long time of back and forth of information, registering, and waiting. However, we finally got the call they needed us up in Boston on February 4 to be seen by the doctors at Boston Children's and Brigham Women's Hospital. We drive the 9 hours from Richmond, Virginia, to Boston, Massachusetts, that Saturday the 3rd. We get there and begin the process of making sure that indeed Jacob is a viable candidate for the procedure and again go over the risk and benefits, for us there is no going back this is what our child needed.
February 5th the procedure was performed. The exact procedure is a fetal aortic dilation, where the doctors position Jacob just right so they can stick a needle into his left ventricle, thread a wire through the needle and then a balloon into the aortic valve to expand the valve to allow for blood to flow out of the heart and hopefully to allow the left ventricle to start to develop more normally. The procedure took 3 hours after several hours of delays due to having 4 sets of twins being born that day in that same hospital. The procedure was a success even after Jacob decided he did not want to be cooperative and get in the right position without a struggle. I was kept over night for observation and the next day they took more ultrasounds and scans and deemed the procedure to be a high success. Jacob's aortic valve had been opened and he was showing no adverse side affects from the procedure. We were sent home with the instruction to follow up with the doctors to continue monitoring Jacob's condition with the understanding this did not fix his heart it only gave him a better chance of having a fully functional heart.
Well fast forward and we are coming to the end of this pregnancy. The pediatric cardiologist here in Richmond has recommended we deliver back in Boston as they are the best at this and would have many different techniques to address what ever may come up. So we are heading back to Boston. I have to be there an entire 3 weeks before Jacob is due meaning I will be out of work sooner than expected and will need to stay an additional 4-6 week after Jacob is born for postnatal care and possible surgery. This places us in tight financial circumstances, we will have additional travel, housing, food, and medical expenses. On top of these expenses we have been hit with other health expenses including my diagnoses of gestational diabetes and gestational hypertension, on top of Kevin's own health struggles that put him in the hospital for a couple days. So not only are we dealing with the additional expenses of delivering a child with health issues we have been hit with so many more complications and unforeseen expenses. We hope that you will help us at this time with a contribution to assist with these expenses to be able to give Jacob the best possible chance at being a healthy, happy child.
The very next week we were in the pediatric cardiologist's office for an fetal echo cardiogram. The doctor explained that Jacob has hypoplastic left heart syndrome with aortic atresia. Which mean his aortic valve was almost completely fused shut causing blood to back up and over stretch his left ventricle. The doctor then went over that there are surgeries that can be completed after birth to compensate for this defect and in 85% of the case the children survive. He also said there is a surgery that can be completed in utero, however, he wasn't sure we were candidates. He said he would send our information up to Boston Children's Hospital anyway since he does not do this experimental surgery and the protocols are always changing.
One week later we get a call saying that Boston had reviewed our case and that they believed we were candidates and would like the pediatric cardiologist to complete another echo cardiogram with focus on specific images and measurements. I rushed into the doctor's office and had those fetal scans done and that night I receive a call from the Cardiologist in Boston going over the procedure, the risks and the benefits. We took the week end to think these things over and sent a few questions to the doctor, by Monday we had decided that we wanted to do this to give Jacob a better chance of survival.
Thus began what felt like a very long time of back and forth of information, registering, and waiting. However, we finally got the call they needed us up in Boston on February 4 to be seen by the doctors at Boston Children's and Brigham Women's Hospital. We drive the 9 hours from Richmond, Virginia, to Boston, Massachusetts, that Saturday the 3rd. We get there and begin the process of making sure that indeed Jacob is a viable candidate for the procedure and again go over the risk and benefits, for us there is no going back this is what our child needed.
February 5th the procedure was performed. The exact procedure is a fetal aortic dilation, where the doctors position Jacob just right so they can stick a needle into his left ventricle, thread a wire through the needle and then a balloon into the aortic valve to expand the valve to allow for blood to flow out of the heart and hopefully to allow the left ventricle to start to develop more normally. The procedure took 3 hours after several hours of delays due to having 4 sets of twins being born that day in that same hospital. The procedure was a success even after Jacob decided he did not want to be cooperative and get in the right position without a struggle. I was kept over night for observation and the next day they took more ultrasounds and scans and deemed the procedure to be a high success. Jacob's aortic valve had been opened and he was showing no adverse side affects from the procedure. We were sent home with the instruction to follow up with the doctors to continue monitoring Jacob's condition with the understanding this did not fix his heart it only gave him a better chance of having a fully functional heart.
Well fast forward and we are coming to the end of this pregnancy. The pediatric cardiologist here in Richmond has recommended we deliver back in Boston as they are the best at this and would have many different techniques to address what ever may come up. So we are heading back to Boston. I have to be there an entire 3 weeks before Jacob is due meaning I will be out of work sooner than expected and will need to stay an additional 4-6 week after Jacob is born for postnatal care and possible surgery. This places us in tight financial circumstances, we will have additional travel, housing, food, and medical expenses. On top of these expenses we have been hit with other health expenses including my diagnoses of gestational diabetes and gestational hypertension, on top of Kevin's own health struggles that put him in the hospital for a couple days. So not only are we dealing with the additional expenses of delivering a child with health issues we have been hit with so many more complications and unforeseen expenses. We hope that you will help us at this time with a contribution to assist with these expenses to be able to give Jacob the best possible chance at being a healthy, happy child.
Organizer
Rachel Woods
Organizer
Bellwood, VA
