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01-22-2007, 09:22 PM
Eric was born November 30, 1986. He came 3 weeks early, which was very unusual for us. My other son and daughter were very overdue. The moment Eric was born the chaos began. He made a deep, gutteral sound instead of crying. They whisked him off before I could see him. My husband left to be with my son and returned when I went into recovery. He then tried to explain that Eric was in trouble and would be helicoptered to Children's Mercy within minutes for surgery. I tried desperately to grasp everything that he and the pediatrician said, but I was in pain and not prepared for anything that was happening. My pregnancy had gone well and we never suspected Eric was in danger.
Eric and hubby left me and surgery was performed when Eric was one hour old. The diaphragmatic hernia affected both lungs...to this day I don't know whether it was considered a left or right hernia. We were told he had 0% chance of survival...the hernia was so big. I didn't see Eric for 3 days as I had to gain enough energy to travel by van to Eric's hospital.
The first week of Eric's life was full of ups and downs. Thirteen years ago, there were no ECMO machines in Kansas City. On his 4th day they were going to send him to St. Louis because he was going to die without ECMO. As I prepared to see him and say goodbye (I couldn't go) my husband called back to say that he was "too sick to move". What did that mean? He had a cerebral hemorrhage and they didn't want him to travel. Every day, every hour we were told would be his last. But on the 5th day our pastor came to pray for him....and miraculously he began to improve! He went from 100% respirator to O2.He survived the hemorrhage, pneumonia and a staph infection. Eric came home at 3 weeks on oxygen and with a g-tube.We still didn't think he was going to make it, but the hospital felt he'd be better at home.
Well, 13 years later Eric is definitely a survivor. It hasn't been easy, but it's been so worth it. He started in a special developmental school at 18 months. At 3 they said he was moderately retarded, had sensory integration dysfunction, oral motor apraxia, and would probably never walk or talk normally. By 6 the apraxia label was removed as he was then talking full sentences. And now we are still looking for the proper "labels". We've spent the last 3 months back at the Children's hospital going through intense testing and evaluation. The psychologist now thinks he has Asperger's Syndrome, a high-functioning form of autism. But just this week we saw the geneticists and they are thinking he has a rare syndrome called Simpson-Golabi-Bemhel. We should know more in a month after more testing.
Eric is a very happy, well-adjusted young man who thinks he's just like everyone else. We've never told him he's different, except we do encourage him when he admits something is really hard for him. He's 5'5" but only weighs 90 pounds. He eats like a horse but burns it quickly. He struggles with sensory issues--vestibular, tactile, proprioceptive.He has processing and motor planning delays, but can understand if you repeat twice. Other than allergies, he's physically healthy now. His strengths are math and reading but his weaknesses make up a longer list, unfortunately. He repeated 2nd grade so he will be going into 7th grade next year. He has always had a full-time aide in the classroom, but is very independent and does much of his work on his own.
I feel that I am way past the experience of Eric's CDH, yet I remember it all like it was yesterday. I'd love to talk to anyone who's not as far in their journey as we are. We feel Eric is a real success story....he's a real blessing to all who know him :)
Written by Erics' mom, Gail Schmitt (Missouri)
2000
Eric and hubby left me and surgery was performed when Eric was one hour old. The diaphragmatic hernia affected both lungs...to this day I don't know whether it was considered a left or right hernia. We were told he had 0% chance of survival...the hernia was so big. I didn't see Eric for 3 days as I had to gain enough energy to travel by van to Eric's hospital.
The first week of Eric's life was full of ups and downs. Thirteen years ago, there were no ECMO machines in Kansas City. On his 4th day they were going to send him to St. Louis because he was going to die without ECMO. As I prepared to see him and say goodbye (I couldn't go) my husband called back to say that he was "too sick to move". What did that mean? He had a cerebral hemorrhage and they didn't want him to travel. Every day, every hour we were told would be his last. But on the 5th day our pastor came to pray for him....and miraculously he began to improve! He went from 100% respirator to O2.He survived the hemorrhage, pneumonia and a staph infection. Eric came home at 3 weeks on oxygen and with a g-tube.We still didn't think he was going to make it, but the hospital felt he'd be better at home.
Well, 13 years later Eric is definitely a survivor. It hasn't been easy, but it's been so worth it. He started in a special developmental school at 18 months. At 3 they said he was moderately retarded, had sensory integration dysfunction, oral motor apraxia, and would probably never walk or talk normally. By 6 the apraxia label was removed as he was then talking full sentences. And now we are still looking for the proper "labels". We've spent the last 3 months back at the Children's hospital going through intense testing and evaluation. The psychologist now thinks he has Asperger's Syndrome, a high-functioning form of autism. But just this week we saw the geneticists and they are thinking he has a rare syndrome called Simpson-Golabi-Bemhel. We should know more in a month after more testing.
Eric is a very happy, well-adjusted young man who thinks he's just like everyone else. We've never told him he's different, except we do encourage him when he admits something is really hard for him. He's 5'5" but only weighs 90 pounds. He eats like a horse but burns it quickly. He struggles with sensory issues--vestibular, tactile, proprioceptive.He has processing and motor planning delays, but can understand if you repeat twice. Other than allergies, he's physically healthy now. His strengths are math and reading but his weaknesses make up a longer list, unfortunately. He repeated 2nd grade so he will be going into 7th grade next year. He has always had a full-time aide in the classroom, but is very independent and does much of his work on his own.
I feel that I am way past the experience of Eric's CDH, yet I remember it all like it was yesterday. I'd love to talk to anyone who's not as far in their journey as we are. We feel Eric is a real success story....he's a real blessing to all who know him :)
Written by Erics' mom, Gail Schmitt (Missouri)
2000