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At 21 weeks along in our pregnancy Michael and I went to get our anatomy scan. We were really excited about what the day would entail. We would be able to see all ten of our baby's fingers and toes, take a look at the spine and brain, and see their little heart beating. We already cheated and knew it was a boy (named Micah!) due to an at home test...but we were still so excited to get an up close look at the rest of our little guy.
Unfortunately the scan did not go as planned. After some awkward silence and a big smile disappearing from our ultrasound technician's face we had a feeling that something was wrong. After talking to the doctor we found out that our little guy has a severe heart defect.
What Micah has is complex. He has something called "double inlet left ventricle," as well as a "ventricle septal defect," and his pulmonary veins did not finish forming either.
What this means is that both Micah's left atrium and right atrium feed in to the left ventricle. Due to this Micah has a very small, almost non existent right ventricle. Micah essentially has half of a heart.
The ventricle septal defect or "VSD" means that there is also a hole between his two ventricles that should not be there. His pulmonary veins are what bring oxygenated blood back from the lungs to the heart. They are functioning, but not completely and did not fully finish growing.
So, what happens next? Thanks to my wonderful sister who works as a high risk OBGYN in Phoenix we got an appointment with the fetal cardiac team at the Phoenix Children's Hospital. It was there that we met Dr. Rao, an amazing woman who explained the process of treatment for our little one. Our first step will happen when Micah is 1 week old. He will go in for surgery to place a shunt in his heart and he will also have his pulmonary veins repaired. His first month of life will be spent in the hospital.
Following that treatment we will be able to have him at home for a few months. At four months old he will go back to the hospital for an open heart surgery called 'The Glenn" procedure. After some weeks of healing we will be able to take him home. Micah should feel so much better after this procedure and will grow as normal for the next few years, hopefully hitting all of the milestones of his peers.
Micah will then need one more open heart surgery during his third year or life called "The Fontan" procedure. These surgeries are essentially designed to make Micah's half of a heart able to function as someone with a fully developed heart would. Everyone hopes and believes that he will be able to have a normal childhood and grow and play along with everyone else. He will by no means be a marathon runner, but our little dude will be able to play light sports like soccer, and go to gym class with the other children.
There is not much research in to a prognosis for adults that have single ventricle hearts as it has not been very long since we have been able to treat these type of defects and have been able to see these children grow up. Micah may need a heart transplant one day - and that may come at 15 years of age or 30 years of age. Only time and how he chooses to take care of his body will tell. We have so much hope for the future as medical advances get even more amazing every day. We know that there will be great strides to the study of congenital heart defects by the time Micah needs more care.
We have started this "Go Fund Me" because we know that our family, friends, and even strangers that we have spoken to want to help, and have asked how they can. We also know that all of this medical care, taking time off of work, banking his umbilical chord for possible stem cell use, etc. will be quite costly. We have already felt overwhelmed at times with the travel between two states to see the doctor. However, as anyone on this planet would agree, this baby deserves every chance we can give him and if anyone has it in their hearts to help us take care of our sweet boy, we would be forever grateful.
We can not wait to meet him. He is already the strongest person we will ever be lucky to know. He is already a hero.
Thank you to everyone who has stopped by to learn about our story. This is just the beginning of a long fight and we know we will have so much support and love given to us along this journey <3
Unfortunately the scan did not go as planned. After some awkward silence and a big smile disappearing from our ultrasound technician's face we had a feeling that something was wrong. After talking to the doctor we found out that our little guy has a severe heart defect.
What Micah has is complex. He has something called "double inlet left ventricle," as well as a "ventricle septal defect," and his pulmonary veins did not finish forming either.
What this means is that both Micah's left atrium and right atrium feed in to the left ventricle. Due to this Micah has a very small, almost non existent right ventricle. Micah essentially has half of a heart.
The ventricle septal defect or "VSD" means that there is also a hole between his two ventricles that should not be there. His pulmonary veins are what bring oxygenated blood back from the lungs to the heart. They are functioning, but not completely and did not fully finish growing.
So, what happens next? Thanks to my wonderful sister who works as a high risk OBGYN in Phoenix we got an appointment with the fetal cardiac team at the Phoenix Children's Hospital. It was there that we met Dr. Rao, an amazing woman who explained the process of treatment for our little one. Our first step will happen when Micah is 1 week old. He will go in for surgery to place a shunt in his heart and he will also have his pulmonary veins repaired. His first month of life will be spent in the hospital.
Following that treatment we will be able to have him at home for a few months. At four months old he will go back to the hospital for an open heart surgery called 'The Glenn" procedure. After some weeks of healing we will be able to take him home. Micah should feel so much better after this procedure and will grow as normal for the next few years, hopefully hitting all of the milestones of his peers.
Micah will then need one more open heart surgery during his third year or life called "The Fontan" procedure. These surgeries are essentially designed to make Micah's half of a heart able to function as someone with a fully developed heart would. Everyone hopes and believes that he will be able to have a normal childhood and grow and play along with everyone else. He will by no means be a marathon runner, but our little dude will be able to play light sports like soccer, and go to gym class with the other children.
There is not much research in to a prognosis for adults that have single ventricle hearts as it has not been very long since we have been able to treat these type of defects and have been able to see these children grow up. Micah may need a heart transplant one day - and that may come at 15 years of age or 30 years of age. Only time and how he chooses to take care of his body will tell. We have so much hope for the future as medical advances get even more amazing every day. We know that there will be great strides to the study of congenital heart defects by the time Micah needs more care.
We have started this "Go Fund Me" because we know that our family, friends, and even strangers that we have spoken to want to help, and have asked how they can. We also know that all of this medical care, taking time off of work, banking his umbilical chord for possible stem cell use, etc. will be quite costly. We have already felt overwhelmed at times with the travel between two states to see the doctor. However, as anyone on this planet would agree, this baby deserves every chance we can give him and if anyone has it in their hearts to help us take care of our sweet boy, we would be forever grateful.
We can not wait to meet him. He is already the strongest person we will ever be lucky to know. He is already a hero.
Thank you to everyone who has stopped by to learn about our story. This is just the beginning of a long fight and we know we will have so much support and love given to us along this journey <3