Baby Zakariya's HLHS Journey
Donation protected
About Us
Asalamu Alaykum! Hello, my name is Jade Fedele and my husband is Mohamad Judeh. I am pregnant with my first child due on Sept. 15, 2017. Me and my husband were married in October 2015 and wanted kids as soon as possible, but decided that it would be best to wait until the time was right before trying to start a family. After getting my Bachelor's degree in December 2016, it finally seemed like a good time for us & it sure didn't take long! By January 8, 2016 I took a pregnancy test and it was positive!! I was only 4 weeks and 2 days pregnant at the time.
Where Our HLHS Journey Began
On April 21, 2017, we scheduled our second routine ultrasound. By now I was 19 weeks pregnant and the baby was big enough to see the gender! We went to the appointment with high anticipation and decided to not find out the gender right away and have a gender reveal. During our baby's anatomy scan, the technician mentioned that it was hard to get a good image of everything because the baby was moving too much but that it was very common. In the office visit with our OBGYN she expressed the same casual concern and assured us it was probably because of the baby's position making it hard to see all 4 heart chambers and that we should see a specialist for a follow-up ultrasound soon. Later that afternoon, we found out that we were having a little boy!!
We went to the follow-up ultrasound at Ochsner West Bank on May 1, 2017 when I was 20 weeks and 3 days. After a long, silent hour, the ultrasound was complete but the MFM specialist was still unable to see all the chambers of his heart. She said she suspected it might be complex cardiac defect called Hypoplastic Left Heart Syndrome, but not to look it up & worry ourselves but to wait for a Pediatric Cardiologist to have a look. It felt like our beautiful picture of a perfect baby was crashing down... but there was still a chance that they were wrong. Two days later we were at Baptist Children's Hospital in New Orleans to meet with Dr. Lara to get a fetal echocardiogram.
The echo was another long hour of dreadful silence as the doctor tried his best to see all the different angles of Zakariya's heart before finishing and speaking privately with us. As we sat in the office, unknowing of the results but hoping to hear it was all a misunderstanding and be on our way, our anxiety grew.
Through all of these visits we were repeatedly asked if we had any family history of congenital heart defects or if I smoke or drank alcohol. Since, we didn't have a history and never smoke or drank it didn't seem like we should worry about our baby having a serious defect. Dr. Lara asked us these questions as well. After we confirming again he laid down the diagrams and began the long explanation of how our son has a congenital heart defect known as HLHS. We sat in disbelief and silence as the doctor explained how the heart is supposed to work versus how our babies heart works.
Basically, HLHS is when the left side of the heart is severely underdeveloped and usually occurs before the first 12 weeks in utero. In our case, like many others the cause is unknown. It requires a minimum of 3 open-heart surgeries to re-route blood flow, allowing half the heart to both pump blood to the lungs and to the body.
The first one (called the Norwood Procedure) is done in the first week of the baby's life, and is considered the most difficult of the three with only about ~67% survival rate. However, after the first procedure, the survival rates jump to ~90%. The second (called the Glenn procedure) will happens when the baby is about 3-6 months old. The third (called the Fontan procedure) happens between the ages of 2 - 4 years old.
Congenital heart defects affect 1% of all babies, which means 1 in every 100 babies born will have a CHD. Only about 1 in 5,000 babies will be born with HLHS & 1 in 1,000 in the U.S. Two-thirds of affected babies are boys.
I stayed silent while he explained everything, waiting to hear that it was no problem and he would be fine only to be told that there was no cure. The only options available were to go forward with the pregnancy, knowing that multiple palliative surgeries and long hospital stays would be required; have the baby and let him pass away in the first week of life without intervention; or get an abortion. It was obvious that we needed to give him his best chance, so we chose to continue and have the procedures.
Unfortunately, not only are none of these surgeries a cure, there isn't a guarantee that they will be successful and he may still end up needing a heart transplant at some point in his life. The doctor informed us that other parts of his body may react badly to the procedures over time and that some people also need a liver transplant as an adult. For the rest of Zakariya's life he will have to see a cardiologist in order to monitor his heart's progress.
Generally, babies with HLHS appear perfectly healthy when they are born. Babies with HLHS can appear cyanotic (bluish), are overly tired, and often times have difficulty feeding. If the babies don't eat enough they will have to be placed on a high-calorie formula or have a feeding tube placed in order to receive the proper nutrition and gain weight.
We were told that there is nothing that the doctors can do before Zakariya is born to fix his heart and there is no procedure that will ever grow the left side of his heart. Since finding out at 20 weeks, there have been many things for us to try to prepared for... and many, many doctor visits. The remainder of my pregnancy and delivery should go as planned. However, I was just diagnosed with gestational diabetes so that will be another challenge for us to overcome.
Initially we were unsure of what to do and have carefully looked into different children's hospitals for getting his surgeries. While most of the best hospitals are located in the Northeast, the closest high ranking hospital in the South is Texas Children's Hospital in Houston. We planned on staying here in New Orleans and getting care at Ochsner's, but recently at Zakariya's 29 week echocardiogram the cardiologist notices moderate to severe tricuspid valve regurgitation, which means he may not be a candidate for the 3-step surgery approach they were planning. Even more importantly, he will likely need to have a complete heart transplant as soon as he is born and one is available. We can deliver here but then Zakariya will need to be flown to Houston early in life. Moving out of state, even temporarily, will we a huge financial burden since my husband would most likely have to change jobs if he can't transfer. This doesn't include the new expenses needed for transportation, housing, and his medical bills and medications.
Texas Children's Hospital is the #1 children's hospital in the nation and Zakariya would have is best chance of surviving if he recieves his care there. If we are able, we will move there before delivering so that he can have the best care in case there is an emergency.
So What's the Plan?
The doctors suggest that it is best for me to be induced around 38 weeks (early September) and deliver at Ochsner Baptist. When Zakariya arrives we will be allowed to see him and hold him for the first few moments, but soon after they will need to take him to give his IV meds in order to keep a vital vessel open (which would otherwise close within the first few hours of birth, making his condition potentially fatal). If they see that his condition has not improved or worsened, he will flown to TCH in Houston to be placed on the organ donor list. It can take abou 2 months for a baby to get a heart transplant (if at all) and the recovery is at least 3 months. If this is the case, we can expect to spend 5-6 months in Texas.
If he does not need a transplant, after the first day he will be transported to Ochsner Children's where he will be for all of his surgeries. The average hospital stay after the first surgery is about 1-2 months. The first surgery and the recovery time between the first and second surgery are the most difficult. My husband will be able to take off as much time as possible but will most likely have to go back to work before he is out of the CVICU.
There will also be many challenges with trying to stay by Zakariya's side and commuting, even if we stay locally. Once we are okay to take Zakariya home after the Norwood he will need check ups every two weeks to see his cardiologist.
I am currently 30 weeks pregnant and have gone for fetal echos at 20 wks, 24 wks, & 29 wks. I will go for another ultrasound follow-up at 34 wks and if the doctors see that his defect has worsened they will likely place him on the heart transplant donor list before he is born and see me weekly for check-ups and ultrasounds. If anything changes in that time I may need to be induced earlier than 38 weeks.
As of today, Zakariya's specific diagnosis is HLHS, atrial septal defect, mitral valve atresia, aortic atresia, underdeveloped aorta, and moderate tricuspid valve regurgitation. It means that his blood is mixing from a hole in his artia, which is good for these babies, that the other structure on the left of the heart are underdeveloped, and that the valve on the right side of the heart isn't working properly.
We have private insurance through Mohamad’s work and have been saving for months in anticipation for his arrival but my fear is that it still won't be enough. With all of the stress that will follow when he is born we feel it is best to start fundraising in advance, especially if he needs a heart transplant. Because of the complicated surgeries needed and long hospital stay, without insurance the Norwood surgery and hospital stay could easily cost over $200,000. Without insurance, a transplant could cost one million dollars. Even with our insurance, having to go for care at TCH and getting a heart transplant could cost us $80,000 out-of-pocket.
The doctors highly recommend HLHS babies to be closely monitored for at least the first year of life. Any changes in his condition could be life-threatening if gone unnoticed. Zakariya has a life-long condition and unexpected emergencies can happen at any time.
Any donations would be greatly appreciated and would help us to get financially ready for the months (and years) ahead. We will also keep everyone posted on fundraising events to help with Zakariya’s cause. Please share to spread awareness.
Thank you all for reading!
JizakAllah khair!
Asalamu Alaykum! Hello, my name is Jade Fedele and my husband is Mohamad Judeh. I am pregnant with my first child due on Sept. 15, 2017. Me and my husband were married in October 2015 and wanted kids as soon as possible, but decided that it would be best to wait until the time was right before trying to start a family. After getting my Bachelor's degree in December 2016, it finally seemed like a good time for us & it sure didn't take long! By January 8, 2016 I took a pregnancy test and it was positive!! I was only 4 weeks and 2 days pregnant at the time.
Where Our HLHS Journey Began
On April 21, 2017, we scheduled our second routine ultrasound. By now I was 19 weeks pregnant and the baby was big enough to see the gender! We went to the appointment with high anticipation and decided to not find out the gender right away and have a gender reveal. During our baby's anatomy scan, the technician mentioned that it was hard to get a good image of everything because the baby was moving too much but that it was very common. In the office visit with our OBGYN she expressed the same casual concern and assured us it was probably because of the baby's position making it hard to see all 4 heart chambers and that we should see a specialist for a follow-up ultrasound soon. Later that afternoon, we found out that we were having a little boy!!
We went to the follow-up ultrasound at Ochsner West Bank on May 1, 2017 when I was 20 weeks and 3 days. After a long, silent hour, the ultrasound was complete but the MFM specialist was still unable to see all the chambers of his heart. She said she suspected it might be complex cardiac defect called Hypoplastic Left Heart Syndrome, but not to look it up & worry ourselves but to wait for a Pediatric Cardiologist to have a look. It felt like our beautiful picture of a perfect baby was crashing down... but there was still a chance that they were wrong. Two days later we were at Baptist Children's Hospital in New Orleans to meet with Dr. Lara to get a fetal echocardiogram.
The echo was another long hour of dreadful silence as the doctor tried his best to see all the different angles of Zakariya's heart before finishing and speaking privately with us. As we sat in the office, unknowing of the results but hoping to hear it was all a misunderstanding and be on our way, our anxiety grew.
Through all of these visits we were repeatedly asked if we had any family history of congenital heart defects or if I smoke or drank alcohol. Since, we didn't have a history and never smoke or drank it didn't seem like we should worry about our baby having a serious defect. Dr. Lara asked us these questions as well. After we confirming again he laid down the diagrams and began the long explanation of how our son has a congenital heart defect known as HLHS. We sat in disbelief and silence as the doctor explained how the heart is supposed to work versus how our babies heart works.
Basically, HLHS is when the left side of the heart is severely underdeveloped and usually occurs before the first 12 weeks in utero. In our case, like many others the cause is unknown. It requires a minimum of 3 open-heart surgeries to re-route blood flow, allowing half the heart to both pump blood to the lungs and to the body.
The first one (called the Norwood Procedure) is done in the first week of the baby's life, and is considered the most difficult of the three with only about ~67% survival rate. However, after the first procedure, the survival rates jump to ~90%. The second (called the Glenn procedure) will happens when the baby is about 3-6 months old. The third (called the Fontan procedure) happens between the ages of 2 - 4 years old.
Congenital heart defects affect 1% of all babies, which means 1 in every 100 babies born will have a CHD. Only about 1 in 5,000 babies will be born with HLHS & 1 in 1,000 in the U.S. Two-thirds of affected babies are boys.
I stayed silent while he explained everything, waiting to hear that it was no problem and he would be fine only to be told that there was no cure. The only options available were to go forward with the pregnancy, knowing that multiple palliative surgeries and long hospital stays would be required; have the baby and let him pass away in the first week of life without intervention; or get an abortion. It was obvious that we needed to give him his best chance, so we chose to continue and have the procedures.
Unfortunately, not only are none of these surgeries a cure, there isn't a guarantee that they will be successful and he may still end up needing a heart transplant at some point in his life. The doctor informed us that other parts of his body may react badly to the procedures over time and that some people also need a liver transplant as an adult. For the rest of Zakariya's life he will have to see a cardiologist in order to monitor his heart's progress.
Generally, babies with HLHS appear perfectly healthy when they are born. Babies with HLHS can appear cyanotic (bluish), are overly tired, and often times have difficulty feeding. If the babies don't eat enough they will have to be placed on a high-calorie formula or have a feeding tube placed in order to receive the proper nutrition and gain weight.
We were told that there is nothing that the doctors can do before Zakariya is born to fix his heart and there is no procedure that will ever grow the left side of his heart. Since finding out at 20 weeks, there have been many things for us to try to prepared for... and many, many doctor visits. The remainder of my pregnancy and delivery should go as planned. However, I was just diagnosed with gestational diabetes so that will be another challenge for us to overcome.
Initially we were unsure of what to do and have carefully looked into different children's hospitals for getting his surgeries. While most of the best hospitals are located in the Northeast, the closest high ranking hospital in the South is Texas Children's Hospital in Houston. We planned on staying here in New Orleans and getting care at Ochsner's, but recently at Zakariya's 29 week echocardiogram the cardiologist notices moderate to severe tricuspid valve regurgitation, which means he may not be a candidate for the 3-step surgery approach they were planning. Even more importantly, he will likely need to have a complete heart transplant as soon as he is born and one is available. We can deliver here but then Zakariya will need to be flown to Houston early in life. Moving out of state, even temporarily, will we a huge financial burden since my husband would most likely have to change jobs if he can't transfer. This doesn't include the new expenses needed for transportation, housing, and his medical bills and medications.
Texas Children's Hospital is the #1 children's hospital in the nation and Zakariya would have is best chance of surviving if he recieves his care there. If we are able, we will move there before delivering so that he can have the best care in case there is an emergency.
So What's the Plan?
The doctors suggest that it is best for me to be induced around 38 weeks (early September) and deliver at Ochsner Baptist. When Zakariya arrives we will be allowed to see him and hold him for the first few moments, but soon after they will need to take him to give his IV meds in order to keep a vital vessel open (which would otherwise close within the first few hours of birth, making his condition potentially fatal). If they see that his condition has not improved or worsened, he will flown to TCH in Houston to be placed on the organ donor list. It can take abou 2 months for a baby to get a heart transplant (if at all) and the recovery is at least 3 months. If this is the case, we can expect to spend 5-6 months in Texas.
If he does not need a transplant, after the first day he will be transported to Ochsner Children's where he will be for all of his surgeries. The average hospital stay after the first surgery is about 1-2 months. The first surgery and the recovery time between the first and second surgery are the most difficult. My husband will be able to take off as much time as possible but will most likely have to go back to work before he is out of the CVICU.
There will also be many challenges with trying to stay by Zakariya's side and commuting, even if we stay locally. Once we are okay to take Zakariya home after the Norwood he will need check ups every two weeks to see his cardiologist.
I am currently 30 weeks pregnant and have gone for fetal echos at 20 wks, 24 wks, & 29 wks. I will go for another ultrasound follow-up at 34 wks and if the doctors see that his defect has worsened they will likely place him on the heart transplant donor list before he is born and see me weekly for check-ups and ultrasounds. If anything changes in that time I may need to be induced earlier than 38 weeks.
As of today, Zakariya's specific diagnosis is HLHS, atrial septal defect, mitral valve atresia, aortic atresia, underdeveloped aorta, and moderate tricuspid valve regurgitation. It means that his blood is mixing from a hole in his artia, which is good for these babies, that the other structure on the left of the heart are underdeveloped, and that the valve on the right side of the heart isn't working properly.
We have private insurance through Mohamad’s work and have been saving for months in anticipation for his arrival but my fear is that it still won't be enough. With all of the stress that will follow when he is born we feel it is best to start fundraising in advance, especially if he needs a heart transplant. Because of the complicated surgeries needed and long hospital stay, without insurance the Norwood surgery and hospital stay could easily cost over $200,000. Without insurance, a transplant could cost one million dollars. Even with our insurance, having to go for care at TCH and getting a heart transplant could cost us $80,000 out-of-pocket.
The doctors highly recommend HLHS babies to be closely monitored for at least the first year of life. Any changes in his condition could be life-threatening if gone unnoticed. Zakariya has a life-long condition and unexpected emergencies can happen at any time.
Any donations would be greatly appreciated and would help us to get financially ready for the months (and years) ahead. We will also keep everyone posted on fundraising events to help with Zakariya’s cause. Please share to spread awareness.
Thank you all for reading!
JizakAllah khair!
Organizer
Jade Fedele Judeh
Organizer
Terrytown, LA