Today started as any normal day...wake up, get ready, eat breakfast, get little man off to school, etc. Today was also a special, a day that we would go to check on Baby Nelson and confirm that he was in fact a BOY. We were excited as this was going to be the last time that we saw him before his big arrival into this world. However, we had no idea what this day would bring to us.
We arrive to our 20 week appointment at 9:30am and we go back for the sonogram. The sonographer was doing her usual check and tells us she is having a hard time finding the little boy part because his legs were together, bummer. His heartbeat was strong and everything seemed normal to us. She prints some pictures off and as she hands some to us she tears one off and says wait here your doctor might want to take a look. As she left the room we looked at each other and knew that something was not right. When she returned to the room she said that the nurse would take us to another room and the doctor would speak with us in there. At this point I was getting really nervous and my anxiety level was rising quickly. The nurse takes us back and we wait patiently for the doctor to arrive. Finally the doctor comes in and she sits down and says that baby Nelson's kidneys were not normal and that I had low amniotic fluid (i.e. one of the main reasons we later find out why I'm not as big as I was with my last pregnancy). She tells us that she has contacted a doctor that is a high risk OBGYN and we are to leave immediately and go to his office, he was expecting us. She said she was so sorry, hang in there, and we would get through this. At this point I am in tears and just in complete shock. I can't explain the feelings (overwhelmed, desperate, hopeful, etc.) - both of our minds are racing. The doctor said that she would have someone help us leave through the back door and we leave without knowing truly what was going on with our son.
We arrive at the high risk OBGYN and wait which seems like forever. Finally we are called back and the doctor performs the second sonogram of the day. He explains to us that Baby Nelson has a blockage which is not allowing him to pee in the womb, which is causing me to have low amniotic fluid. To help you understand this better, a mother will create amniotic fluid for her baby up to 16 weeks of pregnancy but at 16 weeks the baby will take over this function and create this for himself / herself through kidney / urination functions. From this point the baby will ingest / breathe amniotic fluid, process this by urinating, and then continue this cycle to create his / her amniotic fluid. The doctor tells us that our son is having kidney failure and that our case is serious and that he is recommending us to go to Texas Children's Hospital to a doctor that specializes in this condition. He called the doctor to get us seen that day, so off we go again with more information of what is going on, but not knowing what options are available to us.
We arrive at TCH about 1:45 and meet with the clinical counselor that says they will be doing the third sonogram but it wouldn't be till 4 pm that day. Feeling helpless but hopeful (because we know we're in the right place now), we try to go grab a bite to eat even though our minds are not on food at all. Eating did not sound good at this point but we hadn't had anything all day. We return for the sono and a ton of pictures of our boy are taken. The sonographer asks us if we know what the sex of the baby is and we tell her that it is a little boy but were unable to find his little boy part this morning, she is able to find it for us and gives us a picture. During the sono she asks us if our previous sonographers explained to us that our little boy's right foot is a club foot or that there was fluid around his heart, of course we did not know this and this becomes more information to us that I don't think either one of us were prepared for. As the sono is happening people are trickling in the room one by one, you would have been amazed with all the people that were in the room with us during this scan. We had two doctors, several nurses, residents, clinical coordinator, and of course the sonographer. After the sono we were escorted to a conference room were we met with the team and there they explained what was going on with our little boy.
Baby Nelson's condition / diagnosis is LUTO (lower urinary track obstruction). The doctor explained to us that Baby Nelson's left kidney appeared to not be functioning and that his right kidney was dilated (indicating some damage but the extent was unknown). We were also told his bladder did not appear to be as full as most LUTO babies they have seen before. Baby Nelson was not able to urinate therefore causing low amniotic fluid which was critical due to lung develop between 20 to 28 weeks during pregnancy. The club foot and fluid around his heart were both causes of the LUTO with low amniotic fluid (he's not as protected in the womb) and the fluid around the heart was due to back-pressure in our son's body and the heart having to work harder. The main doctor that we would be dealing with told us that we would need to be seen the following day for several appointments / procedures. We would need to see a genetic counselor, a pediatric nephrologist (kidney doctor), a pediatric urologist, have an echo of the baby's heart, and I would have a procedure where they would do a bladder tap to remove urine from the baby and also retrieve cord blood from the baby. LUTO is a condition that is extremely rare, happens in 1 out of 5,000 to 7,000 babies, mostly boys. Also it has nothing to do with ethnicity, environment, or that we did fertility, we were actually their first fertility patient. With all the information that we received we were so overwhelmed and emotionally exhausted. We left TCH at 6:30pm with a lot more information and many questions answered, but even more questions unanswered related to the long-term health of our baby.
For more information about LUTO go to http://www.chop.edu/service/fetal-diagnosis-and-treatment/fetal-diagnoses/lower-urinary-tract-obstruction-luto.html
We arrive to our 20 week appointment at 9:30am and we go back for the sonogram. The sonographer was doing her usual check and tells us she is having a hard time finding the little boy part because his legs were together, bummer. His heartbeat was strong and everything seemed normal to us. She prints some pictures off and as she hands some to us she tears one off and says wait here your doctor might want to take a look. As she left the room we looked at each other and knew that something was not right. When she returned to the room she said that the nurse would take us to another room and the doctor would speak with us in there. At this point I was getting really nervous and my anxiety level was rising quickly. The nurse takes us back and we wait patiently for the doctor to arrive. Finally the doctor comes in and she sits down and says that baby Nelson's kidneys were not normal and that I had low amniotic fluid (i.e. one of the main reasons we later find out why I'm not as big as I was with my last pregnancy). She tells us that she has contacted a doctor that is a high risk OBGYN and we are to leave immediately and go to his office, he was expecting us. She said she was so sorry, hang in there, and we would get through this. At this point I am in tears and just in complete shock. I can't explain the feelings (overwhelmed, desperate, hopeful, etc.) - both of our minds are racing. The doctor said that she would have someone help us leave through the back door and we leave without knowing truly what was going on with our son.
We arrive at the high risk OBGYN and wait which seems like forever. Finally we are called back and the doctor performs the second sonogram of the day. He explains to us that Baby Nelson has a blockage which is not allowing him to pee in the womb, which is causing me to have low amniotic fluid. To help you understand this better, a mother will create amniotic fluid for her baby up to 16 weeks of pregnancy but at 16 weeks the baby will take over this function and create this for himself / herself through kidney / urination functions. From this point the baby will ingest / breathe amniotic fluid, process this by urinating, and then continue this cycle to create his / her amniotic fluid. The doctor tells us that our son is having kidney failure and that our case is serious and that he is recommending us to go to Texas Children's Hospital to a doctor that specializes in this condition. He called the doctor to get us seen that day, so off we go again with more information of what is going on, but not knowing what options are available to us.
We arrive at TCH about 1:45 and meet with the clinical counselor that says they will be doing the third sonogram but it wouldn't be till 4 pm that day. Feeling helpless but hopeful (because we know we're in the right place now), we try to go grab a bite to eat even though our minds are not on food at all. Eating did not sound good at this point but we hadn't had anything all day. We return for the sono and a ton of pictures of our boy are taken. The sonographer asks us if we know what the sex of the baby is and we tell her that it is a little boy but were unable to find his little boy part this morning, she is able to find it for us and gives us a picture. During the sono she asks us if our previous sonographers explained to us that our little boy's right foot is a club foot or that there was fluid around his heart, of course we did not know this and this becomes more information to us that I don't think either one of us were prepared for. As the sono is happening people are trickling in the room one by one, you would have been amazed with all the people that were in the room with us during this scan. We had two doctors, several nurses, residents, clinical coordinator, and of course the sonographer. After the sono we were escorted to a conference room were we met with the team and there they explained what was going on with our little boy.
Baby Nelson's condition / diagnosis is LUTO (lower urinary track obstruction). The doctor explained to us that Baby Nelson's left kidney appeared to not be functioning and that his right kidney was dilated (indicating some damage but the extent was unknown). We were also told his bladder did not appear to be as full as most LUTO babies they have seen before. Baby Nelson was not able to urinate therefore causing low amniotic fluid which was critical due to lung develop between 20 to 28 weeks during pregnancy. The club foot and fluid around his heart were both causes of the LUTO with low amniotic fluid (he's not as protected in the womb) and the fluid around the heart was due to back-pressure in our son's body and the heart having to work harder. The main doctor that we would be dealing with told us that we would need to be seen the following day for several appointments / procedures. We would need to see a genetic counselor, a pediatric nephrologist (kidney doctor), a pediatric urologist, have an echo of the baby's heart, and I would have a procedure where they would do a bladder tap to remove urine from the baby and also retrieve cord blood from the baby. LUTO is a condition that is extremely rare, happens in 1 out of 5,000 to 7,000 babies, mostly boys. Also it has nothing to do with ethnicity, environment, or that we did fertility, we were actually their first fertility patient. With all the information that we received we were so overwhelmed and emotionally exhausted. We left TCH at 6:30pm with a lot more information and many questions answered, but even more questions unanswered related to the long-term health of our baby.
For more information about LUTO go to http://www.chop.edu/service/fetal-diagnosis-and-treatment/fetal-diagnoses/lower-urinary-tract-obstruction-luto.html
