Henryk Joseph Kuehn
Donation protected
At our 20 week ultrasound we were told that we were having another baby boy. We got our ultrasound results back right away that same day and our doctor informed us our son has a two vessel umbilical cord when normally there should be three vessels. Our doctor reassured us that most babies do just fine and most likely there is nothing to worry about or anything we need to do. However, she also informed us that in extremely rare cases it can be an indication of a kidney or heart problem. So she recommended we go to St. Cloud hospital to have a perinatal doctor take a look and make sure.
The next week we went to St. Cloud hospital and had our level two ultrasound of our baby boy. After the ultrasound the doctor asked us what our primary doctor had all told us so far. We told him about the two vessel cord and that she mentioned the possibility of a kidney or heart problem in rare cases. The next words he said to us made our hearts sink. He told us our son had a heart defect and his left ventricle did not develop fully. He wanted us to speak with a genetic counselor immediately as well as a pediatric cardiologist. Within a few minutes we were greeted by the genetic counselor and she went over all the possibilities of chromosomal defects that happen to go with heart defects as well as our chances or future children having a heart defect. After what seemed like the longest conversation of our lives she asked us if we wanted to do an amniocentesis to look for chromosomal defects like Down syndrome. She informed us that the amnio could help the doctors prepare for delivery better if they knew more about our baby before birth but it wasn’t necessary. Of course, with every procedure there is risks and for the amnio it meant 1 in 100 chance that this test that required a large needle going through my stomach and uterus to retrieve amniotic fluid could cause a miscarriage. We had 20 minutes to decide what we wanted to do before we would have to go back to St. Cloud another day for the test if we decided to do it. Bill and I discussed it as much as we could in that little amount of time and decided to do the test. We were taken directly to the perinatal doctor to have the procedure done. We were told it would be 2-3 days for the initial results to come back and 2 weeks for the full results. After he procedure it was time to see the pediatric cardiologist and have an echo on our baby boys little heart. After the echo were found out our son has a form of Hypoplastic Left Heart Syndrom called a DORV (Double Output Right Ventricle) and will need 3 open heart surgeries for this Congenital Heart Defect. He was going to refer us to Children’s Hospital in Minneapolis as they would be the ones to do the heart surgeries.
Genetic results came back great showing that there was no genetic abnormalities and no indication of any chromosomal issues. This was AMAZING news for our family!
Henryk arrived 11-05-18 weighing 7lbs and 20 3/4 inches. We are a very happy family! We were able to take Henryk home momentarily in hopes we can skip a surgery and only have 2. One will be at 3-6 months and one at 3-4 years of age. We will be watching him closely for signs of distress and if that happens he will need a surgery right away.
Donations will go toward medical bills and loss of income during hospital stays with Henryk.
The next week we went to St. Cloud hospital and had our level two ultrasound of our baby boy. After the ultrasound the doctor asked us what our primary doctor had all told us so far. We told him about the two vessel cord and that she mentioned the possibility of a kidney or heart problem in rare cases. The next words he said to us made our hearts sink. He told us our son had a heart defect and his left ventricle did not develop fully. He wanted us to speak with a genetic counselor immediately as well as a pediatric cardiologist. Within a few minutes we were greeted by the genetic counselor and she went over all the possibilities of chromosomal defects that happen to go with heart defects as well as our chances or future children having a heart defect. After what seemed like the longest conversation of our lives she asked us if we wanted to do an amniocentesis to look for chromosomal defects like Down syndrome. She informed us that the amnio could help the doctors prepare for delivery better if they knew more about our baby before birth but it wasn’t necessary. Of course, with every procedure there is risks and for the amnio it meant 1 in 100 chance that this test that required a large needle going through my stomach and uterus to retrieve amniotic fluid could cause a miscarriage. We had 20 minutes to decide what we wanted to do before we would have to go back to St. Cloud another day for the test if we decided to do it. Bill and I discussed it as much as we could in that little amount of time and decided to do the test. We were taken directly to the perinatal doctor to have the procedure done. We were told it would be 2-3 days for the initial results to come back and 2 weeks for the full results. After he procedure it was time to see the pediatric cardiologist and have an echo on our baby boys little heart. After the echo were found out our son has a form of Hypoplastic Left Heart Syndrom called a DORV (Double Output Right Ventricle) and will need 3 open heart surgeries for this Congenital Heart Defect. He was going to refer us to Children’s Hospital in Minneapolis as they would be the ones to do the heart surgeries.
Genetic results came back great showing that there was no genetic abnormalities and no indication of any chromosomal issues. This was AMAZING news for our family!
Henryk arrived 11-05-18 weighing 7lbs and 20 3/4 inches. We are a very happy family! We were able to take Henryk home momentarily in hopes we can skip a surgery and only have 2. One will be at 3-6 months and one at 3-4 years of age. We will be watching him closely for signs of distress and if that happens he will need a surgery right away.
Donations will go toward medical bills and loss of income during hospital stays with Henryk.
Organizer
Celeste Joy Kuehn
Organizer
Clarkfield, MN
