Baby Nolan's Heart
Donation protected
Baby Nolan’s Heart: Tetralogy of Fallot
On July 2nd, 2020 we were given the best gift we could have ever asked for, our miracle baby, a son we named Nolan. We knew we had a long battle ahead of us because our son is a heart warrior. He was born with a congenital heart defect called Tetralogy of Fallot. This is our story.
In the beginning of March 2020, as first-time prospective parents, we went to a routine 20-week ultrasound/anatomy scan. Justin and I were there to find out our unborn baby’s gender, we were having a boy! In addition to what should be a joyous and exciting time, we also found out that our son's kidneys and heart were hard to discern. After multiple appointments, we left our home in Fort St. John, BC, Canada to visit the cardiology team at the Vancouver Women’s and Children’s hospital. On the 23rd of April when I was 27 weeks pregnant, we received extremely devastating news; our unborn son was diagnosed with a very severe congenital heart defect called Tetralogy of Fallot.
Tetralogy of Fallot (TOF) is a combination of four congenital heart abnormalities. The four defects include:
1. Ventricular septal defect (VSD, hole between the two bottom chambers)
2. Pulmonary valve stenosis (restricted blood flow from the right chamber to the pulmonary arteries, which deliver blood to the lungs)
3. Misplaced aorta (anatomic anomaly in which the aorta is positioned directly above VSD thus receiving blood from both the left and right ventricles, resulting in an overall decrease in oxygenated blood and tissue cyanosis)
4. Thickened right ventricular wall/hypertrophy (muscle on the right side of the heart becomes thickened and enlarged)
TOF develops before 8 weeks gestation when the heart does not form correctly. In most cases, like ours, the cause of this is still unknown. In addition, we discovered that Nolan would need corrective open-heart surgery by the time he turns 6 months old. We also found out that newborns like my son who have TOF could turn blue (cyanotic), have shortness of breath, rapid breathing, low energy, sleepiness, and physical delays.
In shock and with unease we returned to our home by plane (with the help of “Hope Air”) to the Northern town of Fort St. John, BC. We did not have family or friends nearby for support. Our families live far from us. I am from Thunder Bay, ON and Nolan's father, Justin is from Abbotsford, BC. We continued our days nervously for about a month of check-ups and ultrasounds, until suddenly my water broke (preterm premature rupture membrane) at 29 weeks pregnant. My unborn son and I were emergency air lifted back to BC Women’s hospital. We stayed in hospital for a few weeks, then moved to a nearby hotel and then to Ronald McDonald House. We went to 3 appointments per week. Pregnant and high risk I was readmitted 3 times due to complications. Luckily, I remained pregnant until an elective cesarean on July 2nd, 2020. Nolan weighed 6lbs 13oz. I could not hold him for the first 24 hours of his life. After 6 days in NICU, sleeping close by to him in a hospital bed and Justin slept on the floor, Nolan was discharged. We stayed near the hospital, until after 3 long months, we finally got the go ahead to take our baby home.
Since then, we have had follow up cardiology appointments in Fort St. John, traveled by car back to Vancouver, and Prince George. Vancouver Children's Hospital (the closest tertiary care) is a 15-hour drive south of us, but a 3-day trip with a newborn. With impending surgery, money is a big added stress. We have been missing months of work, having travel costs, medication, food costs, fuel, flights, hotels and many other costs that add to the strain on this journey for our baby Nolan.
We are asking for donations at this time for it has been and will continue to be financially hard on us to make sure we have all the necessities needed for Nolan’s care. The duration of time spent away from home for his upcoming full corrective open-heart surgery at BC Children’s Hospital will be lengthy. We will have to live away from home in Vancouver during his recovery and post operative check ups. His surgery is scheduled to be just after Christmas and Newyears. During this time, we will not be working and having to pay for our apartment and keep up with our bills. Donations will also help with Nolan’s future and continued care. We hope to focus on healing.
I personally have found it hard to imagine my little baby boy undergoing open heart surgery. I often wondered how to put into words what has been happening with our miracle baby. My son is a heart warrior and a fighter. I will always stand by my baby boy; he has shown me what bravery truly is.
Thank you for listening and taking time to read our story so far. If you are unable to donate, please help baby Nolan’s cause by raising awareness.
Congenital heart defects affect 1/100 babies.
Please share.
A special shout out to the nurses, doctors, cardiologists, specialists, radiologists, etc. Our heroes wear scrubs!
Thank you
Jessica Radford, Nolan’s mommy.
On July 2nd, 2020 we were given the best gift we could have ever asked for, our miracle baby, a son we named Nolan. We knew we had a long battle ahead of us because our son is a heart warrior. He was born with a congenital heart defect called Tetralogy of Fallot. This is our story.
In the beginning of March 2020, as first-time prospective parents, we went to a routine 20-week ultrasound/anatomy scan. Justin and I were there to find out our unborn baby’s gender, we were having a boy! In addition to what should be a joyous and exciting time, we also found out that our son's kidneys and heart were hard to discern. After multiple appointments, we left our home in Fort St. John, BC, Canada to visit the cardiology team at the Vancouver Women’s and Children’s hospital. On the 23rd of April when I was 27 weeks pregnant, we received extremely devastating news; our unborn son was diagnosed with a very severe congenital heart defect called Tetralogy of Fallot.
Tetralogy of Fallot (TOF) is a combination of four congenital heart abnormalities. The four defects include:
1. Ventricular septal defect (VSD, hole between the two bottom chambers)
2. Pulmonary valve stenosis (restricted blood flow from the right chamber to the pulmonary arteries, which deliver blood to the lungs)
3. Misplaced aorta (anatomic anomaly in which the aorta is positioned directly above VSD thus receiving blood from both the left and right ventricles, resulting in an overall decrease in oxygenated blood and tissue cyanosis)
4. Thickened right ventricular wall/hypertrophy (muscle on the right side of the heart becomes thickened and enlarged)
TOF develops before 8 weeks gestation when the heart does not form correctly. In most cases, like ours, the cause of this is still unknown. In addition, we discovered that Nolan would need corrective open-heart surgery by the time he turns 6 months old. We also found out that newborns like my son who have TOF could turn blue (cyanotic), have shortness of breath, rapid breathing, low energy, sleepiness, and physical delays.
In shock and with unease we returned to our home by plane (with the help of “Hope Air”) to the Northern town of Fort St. John, BC. We did not have family or friends nearby for support. Our families live far from us. I am from Thunder Bay, ON and Nolan's father, Justin is from Abbotsford, BC. We continued our days nervously for about a month of check-ups and ultrasounds, until suddenly my water broke (preterm premature rupture membrane) at 29 weeks pregnant. My unborn son and I were emergency air lifted back to BC Women’s hospital. We stayed in hospital for a few weeks, then moved to a nearby hotel and then to Ronald McDonald House. We went to 3 appointments per week. Pregnant and high risk I was readmitted 3 times due to complications. Luckily, I remained pregnant until an elective cesarean on July 2nd, 2020. Nolan weighed 6lbs 13oz. I could not hold him for the first 24 hours of his life. After 6 days in NICU, sleeping close by to him in a hospital bed and Justin slept on the floor, Nolan was discharged. We stayed near the hospital, until after 3 long months, we finally got the go ahead to take our baby home.
Since then, we have had follow up cardiology appointments in Fort St. John, traveled by car back to Vancouver, and Prince George. Vancouver Children's Hospital (the closest tertiary care) is a 15-hour drive south of us, but a 3-day trip with a newborn. With impending surgery, money is a big added stress. We have been missing months of work, having travel costs, medication, food costs, fuel, flights, hotels and many other costs that add to the strain on this journey for our baby Nolan.We are asking for donations at this time for it has been and will continue to be financially hard on us to make sure we have all the necessities needed for Nolan’s care. The duration of time spent away from home for his upcoming full corrective open-heart surgery at BC Children’s Hospital will be lengthy. We will have to live away from home in Vancouver during his recovery and post operative check ups. His surgery is scheduled to be just after Christmas and Newyears. During this time, we will not be working and having to pay for our apartment and keep up with our bills. Donations will also help with Nolan’s future and continued care. We hope to focus on healing.
I personally have found it hard to imagine my little baby boy undergoing open heart surgery. I often wondered how to put into words what has been happening with our miracle baby. My son is a heart warrior and a fighter. I will always stand by my baby boy; he has shown me what bravery truly is.
Thank you for listening and taking time to read our story so far. If you are unable to donate, please help baby Nolan’s cause by raising awareness.Congenital heart defects affect 1/100 babies.
Please share.
A special shout out to the nurses, doctors, cardiologists, specialists, radiologists, etc. Our heroes wear scrubs!
Thank you
Jessica Radford, Nolan’s mommy.
Organizer
Jessica Radford
Organizer
Fort Saint John, BC
