Our Son's story
We were informed of the heart defect at my wife's 20 week ultrasound. It was devastating. We didn't understand and the doctor at the time, did not know what was wrong with the heart. All we knew was there is something wrong with the heart. And something terrible happened to our hearts. The thrill of having a baby or finding out what the sex of the baby was over. The excitement, the happiness had ended. We were filled with emotions of doubt, wonder and sadness. The tears began and to this day, they have not stopped.
We saw the cardiologist the next day and she confirmed there was something wrong but didn't know if it was Tetralogy of Fallot or Truncus. Not knowing what either of those were, we just knew there was something wrong with the heart. After she explained everything and nothing was absorbed because of all of our emotions, we were able to come away from the meeting with TOF is a better condition than Truncus because of the structure of the heart is worse if the baby had Truncus. We did remember her question, "Are you going to keep him?" Well she asked because she had to, because that is her job, an awful job, but her duty. And we learned why we didn't have a lot of time. We didn't have a lot of time left to decide if we wanted to terminate the pregnancy. It was out of the question for us but still a difficult conversation to have. From that point, my wife was transferred to NYP/Columbia and had an unimaginable amount of Doctor appointments and specialists to follow throughout the pregnancy. But mainly, she got a new OB at NYP and of course another pediatric cardiologist.
My wife continued to worry and go to her appointments to follow the baby at the OB because she was automatically considered high-risk and then cardiology appointments to follow the baby's heart. Fortunately, there were not as many ped card visits as there were OB appointments which meant less travelling into the city.
Towards the end of the pregnancy, there was an issue with her fluids so by the end of the term she was going twice a week to the city to get an ultrasound to measure the baby's fluids. Which only added to the stress of the pregnancy when you consider the normal issues that could occur with pregnancies on top of dealing with a heart condition.
As time progressed, the doctors were able to come to an agreement on the diagnosis. In their defense, it was documented years ago, that you it is near impossible to determine TOF with PA versus Truncus in an early term baby. I think the doctor noted, he doesn't practice making the decision early on but that was years ago and fortunate for us our doctors did not practice the same. He was diagnosed with Tetralogy of Fallot with Pulmonary Atresia. In summary, there are four issues with the heart that are diagnosed TOF. And the pulmonary Atresia means there is limited to no flow through the pulmonary valve. But because of the Ductis Arteriosis that closes at birth, the baby is able to survive with medicine given to the baby at birth to keep that artery open.
The replacement valves they used or currently use do not grow with the heart. So as the heart grows, there is a need for more oxygen to the lungs so the valve has to grow too. And there is also pressure and integrity variables in the valve too they have to measure. It means a lifetime of monitoring, following with a cardiologist. But the older he gets, the more time there is in between Dr. appointments. Our son just graduated to cardiologist visits every six months and it is a big accomplishment. Also, One that took some time to get used to the idea and was a relief at the same time. When you raise your child going to the Dr. a lot, it is tough to digest that a doctor will not see your child for an extended period of time.
Because of the fluids and our overall concern of having the baby during rush hour traffic on the GWB, we were able to schedule a date to induce the birth. The date was chosen on his due date because babies with CHDs typically do better going. Or in his case, the longer he was in mama's belly the better.
We arrived at the hospital in the evening and the plan was to start early in the morning. I don't remember too much of that time. My wife laying in bed or a mental image of her water breaking. Overall, it seemed everything was going well but they couldn't seem to get my wife to dilate. She was having contractions and her water did break but he didn't want to come out. Then his heart slowed down for only a minute I think and then again. They kindly told her that they decided a C-section would be best for the baby and handed me a bunny suit and she was rushed away. And after some time, they allowed me in to sit next to her.
We heard crying and the Dr said, "You are not even out yet and you are crying!" The cry was wonderful to hear and probably the only time until this day that it was wonderful. It meant life. It meant he was ok. The nurse showed me him very quickly and then took him away to the transitional NICU where he began is journey with meds, IV, and echo. Eventually, bringing him down to the 7th floor NICU where he would stay for the next 28 days.
We saw the cardiologist the next day and she confirmed there was something wrong but didn't know if it was Tetralogy of Fallot or Truncus. Not knowing what either of those were, we just knew there was something wrong with the heart. After she explained everything and nothing was absorbed because of all of our emotions, we were able to come away from the meeting with TOF is a better condition than Truncus because of the structure of the heart is worse if the baby had Truncus. We did remember her question, "Are you going to keep him?" Well she asked because she had to, because that is her job, an awful job, but her duty. And we learned why we didn't have a lot of time. We didn't have a lot of time left to decide if we wanted to terminate the pregnancy. It was out of the question for us but still a difficult conversation to have. From that point, my wife was transferred to NYP/Columbia and had an unimaginable amount of Doctor appointments and specialists to follow throughout the pregnancy. But mainly, she got a new OB at NYP and of course another pediatric cardiologist.
My wife continued to worry and go to her appointments to follow the baby at the OB because she was automatically considered high-risk and then cardiology appointments to follow the baby's heart. Fortunately, there were not as many ped card visits as there were OB appointments which meant less travelling into the city.
Towards the end of the pregnancy, there was an issue with her fluids so by the end of the term she was going twice a week to the city to get an ultrasound to measure the baby's fluids. Which only added to the stress of the pregnancy when you consider the normal issues that could occur with pregnancies on top of dealing with a heart condition.
As time progressed, the doctors were able to come to an agreement on the diagnosis. In their defense, it was documented years ago, that you it is near impossible to determine TOF with PA versus Truncus in an early term baby. I think the doctor noted, he doesn't practice making the decision early on but that was years ago and fortunate for us our doctors did not practice the same. He was diagnosed with Tetralogy of Fallot with Pulmonary Atresia. In summary, there are four issues with the heart that are diagnosed TOF. And the pulmonary Atresia means there is limited to no flow through the pulmonary valve. But because of the Ductis Arteriosis that closes at birth, the baby is able to survive with medicine given to the baby at birth to keep that artery open.
The replacement valves they used or currently use do not grow with the heart. So as the heart grows, there is a need for more oxygen to the lungs so the valve has to grow too. And there is also pressure and integrity variables in the valve too they have to measure. It means a lifetime of monitoring, following with a cardiologist. But the older he gets, the more time there is in between Dr. appointments. Our son just graduated to cardiologist visits every six months and it is a big accomplishment. Also, One that took some time to get used to the idea and was a relief at the same time. When you raise your child going to the Dr. a lot, it is tough to digest that a doctor will not see your child for an extended period of time.
Because of the fluids and our overall concern of having the baby during rush hour traffic on the GWB, we were able to schedule a date to induce the birth. The date was chosen on his due date because babies with CHDs typically do better going. Or in his case, the longer he was in mama's belly the better.
We arrived at the hospital in the evening and the plan was to start early in the morning. I don't remember too much of that time. My wife laying in bed or a mental image of her water breaking. Overall, it seemed everything was going well but they couldn't seem to get my wife to dilate. She was having contractions and her water did break but he didn't want to come out. Then his heart slowed down for only a minute I think and then again. They kindly told her that they decided a C-section would be best for the baby and handed me a bunny suit and she was rushed away. And after some time, they allowed me in to sit next to her.
We heard crying and the Dr said, "You are not even out yet and you are crying!" The cry was wonderful to hear and probably the only time until this day that it was wonderful. It meant life. It meant he was ok. The nurse showed me him very quickly and then took him away to the transitional NICU where he began is journey with meds, IV, and echo. Eventually, bringing him down to the 7th floor NICU where he would stay for the next 28 days.
NICU
The NICU is an overwhelming place for a parent. All the babies and the beeping machines is a lot to get used to. When we transitioned to NYP, we were given a tour of the NICU and it was good to see the floor before having to stay there for an extended period of time. I think it prepared us versus not going on the tour.
He looked like a healthy baby. He was hooked up to a machine, a loud beeping machine, for his stats to be monitored 24 hours a day. He had an IV for his medicine and food because he couldn't eat with limited heart and lung function. Or more so because he couldnt breath and eat at the same time and handle the work to do both successfully. But he looked good, normal and beautiful.
The next eight days until surgery was time well spent with him. We would get to the hospital early morning and leave late evening which is a tough schedule mentally but seeing him helped. We knew surgery was coming but didn't know when because he was pushed back three times due to emergencies that needed the operating room and that was difficult to deal with but looking back it was just more time spent with him. And I think that is how any parent would remember it.
The nurses were all wonderful. If there was a nurse we didn't like we would tell our social worker and we wouldnt see that nurse again. We found our group of nurses and wrote them down on a list and handed it to our social worker. Our requests were fulfilled, our social worker was wonderful and still is wonderful to this day, god bless her. Every morning, the Doctors would do their rounds and we were invited to listen in even though you really didn't understand what they were saying. Some Doctors involved you in the conversation, some Doctors would let you ask questions or ask you if you had any questions which was great. And some Doctors would not include us which was fine too. It really depended on the Doctor leading the rounds. And that was by practice too, it varied depending on the doctor.
Surgery day arrived and our family spent the day in the lounge from early morning throughout the day, worrying sick about our little guy. We have a great support system which helps tremendously but nothing will prepare you for the moment you hand your baby over to the surgeon's assistant. Or when you walk your baby down to the OR with the nurses. Or ever prepare you for sitting in a lounge all day waiting for news, good news from the surgeon. It is impossible. It will test everything you are and moments like that are easier with family.
After what seemed like all day, the surgeon came back with the good news that he was stable and doing well and then he went over the procedure of about 7 hours in a matter of four to six sentences. And I hugged my wife. We held each other with relief like nothing else mattered in the world and it didn't matter because our baby was OK.
After an hour or so we were able to go visit him. Only two at a time and only for a short while because his chest was still open and there was a concern for infection. When the heart is on bypass for an extended period of time there is a chance for swelling and closing the chest would compress the heart and decrease heart function. So, my wife and I went first. As we approached him, I lost consciousness, I lost the air in my lungs, my chest collapsed. I mentally shut down. I didn't pass out, I was physically functioning but I don't remember and it was too much for me.
He was swollen, it didn't look like him. He was comatose, on his back with his legs kind of straight and his arms stretched straight. His heart was beating through a semi-transparent film across his chest. There were countless syringes on pumps administering medicine and a huge ventilator machine next to his bed breathing for him via a tube down his throat. More IVs, three chest tubes draining excess fluids from his heart coming out of his abdomen and chest. It was a horrific site to see but I just told myself he was OK. After a few minutes, I brought in his grandparents, aunt and uncle, one at a time.
The next few days were a roller coaster ride in terms of his health. He was doing well overall and we got used to phrase, par for the course. There are a lot of things that are par for the course. You just try not to worry about the little things that go wrong, though impossible, and try to look at the overall or the big picture of his health. The direction he is heading in which by the grace of god was always in the right direction and par for the course.
We spent the first night so we could be there in case anything went wrong because the first 24 hours were a crucial time in his recovery. There is a room in the NICU set up for families to talk to the doctors or to get away for a few minutes and that is where we slept. There were no issues that night that we were aware of and we woke up that morning and spent the day in the lobby. I took this black and white photo of my wife sleeping in a chair by the window, covered with blankets, with her feet on the chair across from her. It symbolized her strength and reminds me of how amazing she is. And that is how we spent the next several days. With short visits throughout the day and check-ins with the nurses. We rested in the lobby until they closed his chest several days later.
I can't remember the process of recovery step by step but I can tell you he quickly got better. His chest was closed and then the next day he was no longer on the ventilator. The next day, his eyes were open and the medicine pumps were slowly going away and he was becoming more awake. My wife was able to hold him again, change his diapers again, weigh the diapers and take his temperature and yes me too. It was a blur but I can still remember the little surprises everyday like coming in and an IV was gone or his chest tubes were taken out that meant he was getting better. Big milestones that were gifted overnight.
And then he was ready to feed. His mother had been pumping the whole time freezing the milk, suffering through infections and he was finally able to take advantage of her efforts. My wife fed him the first time and he could only eat what he could and rest was pushed down a feeding tube. It seemed they had a specific amount of time to eat and then the intake was counterproductive so he needed a feeding tube. He eventually came home with the feeding tube through his nose and that meant mom had to learn how to insert the feeding tube in his nostril, down his throat in case it fell out at home. Which is one of the worst things you could ever do as a parent. We also had to rent a pump to use at home. The pump was easy, him pulling the tube out at 2 AM every time was not so easy. And when he did finally come home, he was feeding 15ML at a time which wasn't too good.
And the time finally came when he was ready to go home. The hospital offers a room they call the launch pad. It is a room for parents to spend a night with their child before they take them home in case there are any worries or issues, there is a nurse a call away. We thought it was a good idea to spend the night to calm any concerns we had bringing him. We had a great night feeding him with little issues and the following day, we were able to take him home. Finally, after twenty-eight days in the NICU we finally were able to bring him home.
He looked like a healthy baby. He was hooked up to a machine, a loud beeping machine, for his stats to be monitored 24 hours a day. He had an IV for his medicine and food because he couldn't eat with limited heart and lung function. Or more so because he couldnt breath and eat at the same time and handle the work to do both successfully. But he looked good, normal and beautiful.
The next eight days until surgery was time well spent with him. We would get to the hospital early morning and leave late evening which is a tough schedule mentally but seeing him helped. We knew surgery was coming but didn't know when because he was pushed back three times due to emergencies that needed the operating room and that was difficult to deal with but looking back it was just more time spent with him. And I think that is how any parent would remember it.
The nurses were all wonderful. If there was a nurse we didn't like we would tell our social worker and we wouldnt see that nurse again. We found our group of nurses and wrote them down on a list and handed it to our social worker. Our requests were fulfilled, our social worker was wonderful and still is wonderful to this day, god bless her. Every morning, the Doctors would do their rounds and we were invited to listen in even though you really didn't understand what they were saying. Some Doctors involved you in the conversation, some Doctors would let you ask questions or ask you if you had any questions which was great. And some Doctors would not include us which was fine too. It really depended on the Doctor leading the rounds. And that was by practice too, it varied depending on the doctor.
Surgery day arrived and our family spent the day in the lounge from early morning throughout the day, worrying sick about our little guy. We have a great support system which helps tremendously but nothing will prepare you for the moment you hand your baby over to the surgeon's assistant. Or when you walk your baby down to the OR with the nurses. Or ever prepare you for sitting in a lounge all day waiting for news, good news from the surgeon. It is impossible. It will test everything you are and moments like that are easier with family.
After what seemed like all day, the surgeon came back with the good news that he was stable and doing well and then he went over the procedure of about 7 hours in a matter of four to six sentences. And I hugged my wife. We held each other with relief like nothing else mattered in the world and it didn't matter because our baby was OK.
After an hour or so we were able to go visit him. Only two at a time and only for a short while because his chest was still open and there was a concern for infection. When the heart is on bypass for an extended period of time there is a chance for swelling and closing the chest would compress the heart and decrease heart function. So, my wife and I went first. As we approached him, I lost consciousness, I lost the air in my lungs, my chest collapsed. I mentally shut down. I didn't pass out, I was physically functioning but I don't remember and it was too much for me.
He was swollen, it didn't look like him. He was comatose, on his back with his legs kind of straight and his arms stretched straight. His heart was beating through a semi-transparent film across his chest. There were countless syringes on pumps administering medicine and a huge ventilator machine next to his bed breathing for him via a tube down his throat. More IVs, three chest tubes draining excess fluids from his heart coming out of his abdomen and chest. It was a horrific site to see but I just told myself he was OK. After a few minutes, I brought in his grandparents, aunt and uncle, one at a time.
The next few days were a roller coaster ride in terms of his health. He was doing well overall and we got used to phrase, par for the course. There are a lot of things that are par for the course. You just try not to worry about the little things that go wrong, though impossible, and try to look at the overall or the big picture of his health. The direction he is heading in which by the grace of god was always in the right direction and par for the course.
We spent the first night so we could be there in case anything went wrong because the first 24 hours were a crucial time in his recovery. There is a room in the NICU set up for families to talk to the doctors or to get away for a few minutes and that is where we slept. There were no issues that night that we were aware of and we woke up that morning and spent the day in the lobby. I took this black and white photo of my wife sleeping in a chair by the window, covered with blankets, with her feet on the chair across from her. It symbolized her strength and reminds me of how amazing she is. And that is how we spent the next several days. With short visits throughout the day and check-ins with the nurses. We rested in the lobby until they closed his chest several days later.
I can't remember the process of recovery step by step but I can tell you he quickly got better. His chest was closed and then the next day he was no longer on the ventilator. The next day, his eyes were open and the medicine pumps were slowly going away and he was becoming more awake. My wife was able to hold him again, change his diapers again, weigh the diapers and take his temperature and yes me too. It was a blur but I can still remember the little surprises everyday like coming in and an IV was gone or his chest tubes were taken out that meant he was getting better. Big milestones that were gifted overnight.
And then he was ready to feed. His mother had been pumping the whole time freezing the milk, suffering through infections and he was finally able to take advantage of her efforts. My wife fed him the first time and he could only eat what he could and rest was pushed down a feeding tube. It seemed they had a specific amount of time to eat and then the intake was counterproductive so he needed a feeding tube. He eventually came home with the feeding tube through his nose and that meant mom had to learn how to insert the feeding tube in his nostril, down his throat in case it fell out at home. Which is one of the worst things you could ever do as a parent. We also had to rent a pump to use at home. The pump was easy, him pulling the tube out at 2 AM every time was not so easy. And when he did finally come home, he was feeding 15ML at a time which wasn't too good.
And the time finally came when he was ready to go home. The hospital offers a room they call the launch pad. It is a room for parents to spend a night with their child before they take them home in case there are any worries or issues, there is a nurse a call away. We thought it was a good idea to spend the night to calm any concerns we had bringing him. We had a great night feeding him with little issues and the following day, we were able to take him home. Finally, after twenty-eight days in the NICU we finally were able to bring him home.
Home
At first, having him home was scary. The idea of not having a nurse next to him all the time or not being able to see his stats on a machine was an uneasy feeling. There were no doctors looking at him anymore. It took a long time to adjust. We knew there was something wrong with his heart and that was a heavy burden for us at first and still is but it lessens over time. Eventually it became our normal and while it is still not easy to handle sometimes, the worrying gets easier. The burden slowly gets lighter until the next complication happens and all the pain resurfaces again.
Because of his surgery he had feeding issues so he had to have feeding therapy, then he had physical therapy and then he had to have occupational therapy. It was a lot to handle and it was my wife who gets the credit for handling all those appointments. We never thought that because of his surgery he wouldn't be able to eat. So not eating affected his feeding ability because those muscles were slower to develop and then that affected his swallowing of solid foods. It was all of these added issues that resulted from his heart that we did not expect. And then eventually, like everything else it becomes your normal and you adjust. You get used to everyone's comments about what he should be doing or what he is not doing and you mentally ignore them because they do not understand.
He eventually needed surgery once again to replace his valve at 18 months and he had a catheter procedure prior to accurately measure the heart pressure and possibly correct any issues they found. But the artery was too small and had lost integrity and it was something they could not fix in the cath lab. The valve they used this time was a conduit and larger so we are hoping we get more time out of this valve than the last. But we will cross that bridge when we get there.
The most important lesson we have learned is to enjoy the time we spend with him. He is three and a half years old now and you would never know he has a heart condition unless you saw his scar. The only difference we see now is he tires quicker than others his age. But overall, he is a happy, healthy little boy with twenty times the energy that I have. He is bright, amazing and developing appropriately for his age if not better. We could see from the day he was born, he is a fighter and thank God because he needs to be.
Because of his surgery he had feeding issues so he had to have feeding therapy, then he had physical therapy and then he had to have occupational therapy. It was a lot to handle and it was my wife who gets the credit for handling all those appointments. We never thought that because of his surgery he wouldn't be able to eat. So not eating affected his feeding ability because those muscles were slower to develop and then that affected his swallowing of solid foods. It was all of these added issues that resulted from his heart that we did not expect. And then eventually, like everything else it becomes your normal and you adjust. You get used to everyone's comments about what he should be doing or what he is not doing and you mentally ignore them because they do not understand.
He eventually needed surgery once again to replace his valve at 18 months and he had a catheter procedure prior to accurately measure the heart pressure and possibly correct any issues they found. But the artery was too small and had lost integrity and it was something they could not fix in the cath lab. The valve they used this time was a conduit and larger so we are hoping we get more time out of this valve than the last. But we will cross that bridge when we get there.
The most important lesson we have learned is to enjoy the time we spend with him. He is three and a half years old now and you would never know he has a heart condition unless you saw his scar. The only difference we see now is he tires quicker than others his age. But overall, he is a happy, healthy little boy with twenty times the energy that I have. He is bright, amazing and developing appropriately for his age if not better. We could see from the day he was born, he is a fighter and thank God because he needs to be.