Saving Baby Aleksander
Donation protected
Hello everyone! This is really hard for me, because I really have a difficult time asking for help, and this is a pretty long story, so buckle up for a bumpy ride.
CDH occurs in 1 out of every 2500 pregnancies.
It all began January 2nd, when I miscarried at 8 weeks during my first pregnancy. It was a missed miscarriage, which required a procedure afterwards as my body wanted to hold onto the baby. My boyfriend and I were absolutely devastated.
Then, in March, shortly before COVID hit the world in full spring, I found out I was pregnant. I was so excited to be carrying my miracle rainbow baby, but I could not shake the feeling that something was wrong. I went to the doctor repeatedly due to minor issues with pain and bleeding, but everything seemed okay, except the baby was measuring small. We decided to name the baby Aleksander Odyn Smith.
Fast forward to July, when at a scan, they thought they saw something wrong with the brain, and they began to discuss options, such as termination and specialty care, etc. At this point, we were sent to the maternal fetal medicine specialist, where they did not see anything wrong with the brain. Thank goodness, it had just been a bad scan. However, what they did see was equally scary. The baby's heart was pushed over. From there, we went to Duke for a second opinion, where the diagnosis was confirmed.
At around twenty weeks, Baby Aleksander was diagnosed with a congenital diaphragmatic hernia. This condition occurs when the diaphragm does not form correctly, and a hole is left in the diaphragm, allowing abdominal contents to enter the chest. After much testing, we know that Aleksander has a left sided congenital diaphragmatic hernia (LCDH), with his stomach, spleen, bowel, and part of his liver having all moved into his chest. This has pushed his heart all the way to the right side, and it has affected the growth of his lungs. This is considered a severe CDH.
After frustrating appointments locally, where we were left with little hope of our little boy surviving, we began to reach out to other families with CDH survivors and organizations that specialize in CDH kiddos. We found out that Johns Hopkins All Children's Hospital (JHACH), in Florida, has a specialty team and an amazing doctor, Dr. Kays, for CDH with over a 90% survival rate, assuming nothing else is wrong with the baby.
This past week, we went for our consult with them. We received some positive news and some difficult news. We also had an amniocentesis done to look further into the baby's genetics. Aleksander is small for his gestational age, which is concerning because part of the treatment for CDH involves ECMO, this is a procedure that helps oxygenate the blood if the baby cannot breathe independently. Aleksander will need to make it approximately 4 lbs in utero to be a candidate for ECMO. At this time, it is 95% likely he will need ECMO. If he makes it to this size, and there are no other complicating factors, he has an 80% chance of survival, compared to the lack of any hope locally. If he does not make it to this size, he has a less than 25% chance of survival. As of right now, complicating these factors are my borderline blood pressure and gestational diabetes. My hope is that if I can manage my stress and manage my diet well, that I will make it until he is the right size. Right now, he weighs approximately 1 pound and 13 ounces, but he is about 2 weeks behind the size he should be. The doctor is concerned that he may not make it to 34 weeks, but I have faith and hope because he is a little fighter.
Currently, we live in North Carolina, and we will need to journey to Florida when I am approximately 34 weeks in order to give Aleksander the best chance at life. This is ten hour drive. The average hospital stay for a severe baby is approximately 3 to 4 months in addition to the month ahead I will need to be in Florida. I will need to be able to pay my bills at home as well as pay for the things we need while we are in Florida. Due to my anxiety, I have not even bought all the baby things I need, because I am so worried. As a teacher, I will not have paid leave, and so I am terrified that I will be unable to pay my bills while I am in Florida. I want to be able to stay with my baby in the hospital, because I want to know that I have done everything I possibly could in order to save his life. My boyfriend feels the exact same.
Any money donated will not be withdrawn until we go to Florida and will be used to: pay medical bills, provide travel costs, pay for any lodging/food needed, pay for baby supplies, etc. This will allow me to stay in the hospital with my son while he is fighting for his life.
CDH occurs in 1 out of every 2500 pregnancies.
It all began January 2nd, when I miscarried at 8 weeks during my first pregnancy. It was a missed miscarriage, which required a procedure afterwards as my body wanted to hold onto the baby. My boyfriend and I were absolutely devastated.
Then, in March, shortly before COVID hit the world in full spring, I found out I was pregnant. I was so excited to be carrying my miracle rainbow baby, but I could not shake the feeling that something was wrong. I went to the doctor repeatedly due to minor issues with pain and bleeding, but everything seemed okay, except the baby was measuring small. We decided to name the baby Aleksander Odyn Smith.
Fast forward to July, when at a scan, they thought they saw something wrong with the brain, and they began to discuss options, such as termination and specialty care, etc. At this point, we were sent to the maternal fetal medicine specialist, where they did not see anything wrong with the brain. Thank goodness, it had just been a bad scan. However, what they did see was equally scary. The baby's heart was pushed over. From there, we went to Duke for a second opinion, where the diagnosis was confirmed.
At around twenty weeks, Baby Aleksander was diagnosed with a congenital diaphragmatic hernia. This condition occurs when the diaphragm does not form correctly, and a hole is left in the diaphragm, allowing abdominal contents to enter the chest. After much testing, we know that Aleksander has a left sided congenital diaphragmatic hernia (LCDH), with his stomach, spleen, bowel, and part of his liver having all moved into his chest. This has pushed his heart all the way to the right side, and it has affected the growth of his lungs. This is considered a severe CDH.
After frustrating appointments locally, where we were left with little hope of our little boy surviving, we began to reach out to other families with CDH survivors and organizations that specialize in CDH kiddos. We found out that Johns Hopkins All Children's Hospital (JHACH), in Florida, has a specialty team and an amazing doctor, Dr. Kays, for CDH with over a 90% survival rate, assuming nothing else is wrong with the baby.
This past week, we went for our consult with them. We received some positive news and some difficult news. We also had an amniocentesis done to look further into the baby's genetics. Aleksander is small for his gestational age, which is concerning because part of the treatment for CDH involves ECMO, this is a procedure that helps oxygenate the blood if the baby cannot breathe independently. Aleksander will need to make it approximately 4 lbs in utero to be a candidate for ECMO. At this time, it is 95% likely he will need ECMO. If he makes it to this size, and there are no other complicating factors, he has an 80% chance of survival, compared to the lack of any hope locally. If he does not make it to this size, he has a less than 25% chance of survival. As of right now, complicating these factors are my borderline blood pressure and gestational diabetes. My hope is that if I can manage my stress and manage my diet well, that I will make it until he is the right size. Right now, he weighs approximately 1 pound and 13 ounces, but he is about 2 weeks behind the size he should be. The doctor is concerned that he may not make it to 34 weeks, but I have faith and hope because he is a little fighter.
Currently, we live in North Carolina, and we will need to journey to Florida when I am approximately 34 weeks in order to give Aleksander the best chance at life. This is ten hour drive. The average hospital stay for a severe baby is approximately 3 to 4 months in addition to the month ahead I will need to be in Florida. I will need to be able to pay my bills at home as well as pay for the things we need while we are in Florida. Due to my anxiety, I have not even bought all the baby things I need, because I am so worried. As a teacher, I will not have paid leave, and so I am terrified that I will be unable to pay my bills while I am in Florida. I want to be able to stay with my baby in the hospital, because I want to know that I have done everything I possibly could in order to save his life. My boyfriend feels the exact same.
Any money donated will not be withdrawn until we go to Florida and will be used to: pay medical bills, provide travel costs, pay for any lodging/food needed, pay for baby supplies, etc. This will allow me to stay in the hospital with my son while he is fighting for his life.
Organizer
Anastacia Newton
Organizer
Winston-Salem, NC