Dear Mr. Sparks,
I live in Phoenix AZ and am a 32 year old mother of 2 beautiful and healthy girls ages 4 and 2. In February of 1998 I learned that I was pregnant again, a big surprise, but a welcomed one. We were elated when we learned at 17 weeks that we would have a son and that he was healthy. The technician had a difficult time seeing all four chambers of our son's heart but said it was because he was asleep in a bad position and it was nothing to be concerned about. She said that we would see what the radiologist thought and if needed I could have a "freebie" ultrasound just to scan the heart. Two weeks later I saw my OB who said that the radiologist said everything looked great, no need for a follow-up ultrasound. I said well she said it would be free, we would like to take advantage of that, it would be "fun" to have another ultrasound.
She told me let's wait until your next visit in 4 weeks, we will see more. So at 23weeks I had my "for fun" ultrasound and my life would never be the same again. The technician lied to us and said everything looked great. The next week my OB's office called and said that the technician saw a shadow on the right side of the chest and was unable to view the babies stomach. She ordered a level 2 ultrasound. I got a hold of the second ultrasound report from the radiologist and was terrified. It reported that the abdomen measurement was lagging behind by 2 weeks. It stated that they were concerned about a large cyst in the chest, and the absence of a fluid filled stomach. They were also unable to get a good view of the heart.
We went in for the level 2 completely clueless. The technician told us our son had a congenital diaphragmatic hernia and believe it or not we were relieved. We thought oh it's just a hernia, no big deal. The cyst they saw was the stomach, just in the chest. CDH is caused by a defect in the diaphragm. It allows the abdominal contents to enter the chest and impede the growth of the lungs. The doctor came in and told us he had a 50-50 chance at surviving, we were devastated. I had an amniocentesis that day which came back normal.
The weeks that followed were pure hell. Specialist after specialist all with grim and bad news. We learned that son's hernia involved the liver stomach and bowel. The liver reduced his chance of survival to about 30%, but we never gave up. They were unsure if he also had Ventral Septal Heart Defect. He also had a 2 vessel umbilical cord. The pediatric cardiologist was unable to see any blood supply going to the left lung raising the possibility of severe hypoplasia (underdevelopment). We were told by doctor after doctor to terminate, we never considered this. But it made us realize just how grave our son's condition was.
I developed polyhydramnios, which is a bad sign for this condition. Polyhydramnios is excess amniotic fluid. Due to this condition I was induced at 36 weeks. Our son entered this world at 10:50pm on 10-15-98. He was placed on me with the cord still attached and then accessed by the neonatologist. She realized there was nothing that could be done for our precious son, and he later died in my arms. We later learned that his chest had bowel, spleen, colon, stomach, and liver inside it. His left lung was only 1.5 cm, too small to sustain life. I still get numb when I type died, it seems so real, and it is so real. I miss my precious boy and am thankful that I have so many pictures of my precious son and even some video. One day I hope to show my little girls their baby brother, the brother they so desperately wanted.
Thank you for reading our story.
Sincerely,
Nicholas' mom, Dawn Brucher (Arizona)
I live in Phoenix AZ and am a 32 year old mother of 2 beautiful and healthy girls ages 4 and 2. In February of 1998 I learned that I was pregnant again, a big surprise, but a welcomed one. We were elated when we learned at 17 weeks that we would have a son and that he was healthy. The technician had a difficult time seeing all four chambers of our son's heart but said it was because he was asleep in a bad position and it was nothing to be concerned about. She said that we would see what the radiologist thought and if needed I could have a "freebie" ultrasound just to scan the heart. Two weeks later I saw my OB who said that the radiologist said everything looked great, no need for a follow-up ultrasound. I said well she said it would be free, we would like to take advantage of that, it would be "fun" to have another ultrasound.
She told me let's wait until your next visit in 4 weeks, we will see more. So at 23weeks I had my "for fun" ultrasound and my life would never be the same again. The technician lied to us and said everything looked great. The next week my OB's office called and said that the technician saw a shadow on the right side of the chest and was unable to view the babies stomach. She ordered a level 2 ultrasound. I got a hold of the second ultrasound report from the radiologist and was terrified. It reported that the abdomen measurement was lagging behind by 2 weeks. It stated that they were concerned about a large cyst in the chest, and the absence of a fluid filled stomach. They were also unable to get a good view of the heart.
We went in for the level 2 completely clueless. The technician told us our son had a congenital diaphragmatic hernia and believe it or not we were relieved. We thought oh it's just a hernia, no big deal. The cyst they saw was the stomach, just in the chest. CDH is caused by a defect in the diaphragm. It allows the abdominal contents to enter the chest and impede the growth of the lungs. The doctor came in and told us he had a 50-50 chance at surviving, we were devastated. I had an amniocentesis that day which came back normal.
The weeks that followed were pure hell. Specialist after specialist all with grim and bad news. We learned that son's hernia involved the liver stomach and bowel. The liver reduced his chance of survival to about 30%, but we never gave up. They were unsure if he also had Ventral Septal Heart Defect. He also had a 2 vessel umbilical cord. The pediatric cardiologist was unable to see any blood supply going to the left lung raising the possibility of severe hypoplasia (underdevelopment). We were told by doctor after doctor to terminate, we never considered this. But it made us realize just how grave our son's condition was.
I developed polyhydramnios, which is a bad sign for this condition. Polyhydramnios is excess amniotic fluid. Due to this condition I was induced at 36 weeks. Our son entered this world at 10:50pm on 10-15-98. He was placed on me with the cord still attached and then accessed by the neonatologist. She realized there was nothing that could be done for our precious son, and he later died in my arms. We later learned that his chest had bowel, spleen, colon, stomach, and liver inside it. His left lung was only 1.5 cm, too small to sustain life. I still get numb when I type died, it seems so real, and it is so real. I miss my precious boy and am thankful that I have so many pictures of my precious son and even some video. One day I hope to show my little girls their baby brother, the brother they so desperately wanted.
Thank you for reading our story.
Sincerely,
Nicholas' mom, Dawn Brucher (Arizona)
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