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01-23-2007, 02:44 AM
[left:56f5e561ee]http://www.cherubs-cdh.org/Album/new/goembel-matthew.jpg[/left:56f5e561ee]I had just gotten used to being mom to a six-month-old little girl only to find I was pregnant again. This was a total surprise for us in view of the fact that it took me a little while to get pregnant the first time. This time, I took fertility pills and became pregnant real quickly. It seemed to be going great the first few months. However, when I got a routine sonogram everything had started.
My husband, Bob, and I went in for the sonogram together. Everything seemed to be going fine. Then all of a sudden the viewing screen was turned away from us and all these techs came running in. I was very upset. No one would tell us anything. I knew something was wrong. The only thing said to us was that we would have to talk to my doctor. The doctor called the same day wanting me to come in to talk with him.
I went in and the first question out of my mouth was "Is my baby going to die"? He said the baby had internal organs in his chest that could either be a hiatus hernia or CDH. He said he wasn’t sure and told me I would have to have another sonogram in my ninth month. All in all this pregnancy was my best yet—go figure. I went in for my ninth month sonogram only to discover no change. I was then referred to a high-risk doctor.
The following day we saw this doctor. It was at this point with a level two sonogram that we learned all about CDH. The doctor had confirmed that our son definitely had one. We didn’t know what to think; we didn’t even know what CDH was. Well at that point we learned all about it. I had asked him the same question. "Is my baby going to die?" He told me there was a 50/50 chance of survival. Well we thought that was better than nothing.
We were taken down to the NICU unit and introduced to the nurses and doctors that we were going to be taking care of our son. They were all real nice. We also learned about ECMO—which was very scary. We were not sure at that time if our son would require it or not. The nurses said some do, some don’t. We hoped he would not.
The next day my labor induced. I don’t think I need to say how hard that was; forcing a baby to come out who we weren’t sure would live. At that time I was 37 weeks and five days pregnant. I was told it was good that I had a baby previously otherwise induction wouldn’t work. Well, 18 hours later (I was taken off pitocin overnight) Matthew Robert Goembel was born. He was pink and screaming. I can’t tell you how happy we were!!! We had been told there was no way to determine how much lungs he had until birth.
On March 21,1993 Matt had his first surgery. He was only two days old and fighting for his life. He had his hernia repaired. They were able to close it with no patch. The real battle had just begun. Matthew seemed to come through with no complications. He was off his vent in 10 days. Boy! Were we ever glad. He was doing really great until they tried to feed him.
We learned a whole other spectrum---we thought he was going to get fixed and go right home. Ha! They had discovered that Matthew’s stomach had flipped over. This is called volvulus. So, back to surgery we go. He had healed and they tried feeding him again. Nothing would go through and stay down. This time his intestines did the flipping and kinking over. Back to surgery we go. He healed and this time they put a j-tube and a g-tube in. He healed and they tried again. This time scar tissue had grown over his stomach opening. At any rate, he went back in and then he healed. The hospital never found out why.
I talked to Matthew’s doctors and told them I wanted him out of there. They said, "no." I said "yes" and took him anyway. I had already contacted another doctor. This time it was a peds gastroenterologist; he was fantastic! Finally someone to help me. After numerous tests we discovered Matthew had esophagitis so bad that he could not have a nissen done which is what we needed all along. We had to wait nine months for him to heal. We went home and Matt was getting fed through his g-tube.
Matthew went back and had his surgery; it was a huge success. Trying to get him to eat was not successful. He remained on his pump 12 hours a day. No, this is not where the story ends. Matthew ended back up again. He broke down his surgery from constantly retching. Come to find out he could not handle feed tubings. His nissen was repaired and we went home. He was put back on the kangaroo pump (he had one before with his j-tube). Everything seemed to be going smoothly. Well, you would think we could get some good luck by now, huh?
We ended up back at the hospital. This time his stomach had swollen and we didn’t know where it was coming from. After numerous tests they discovered that Matthew’s colon and spleen were kinked over due to scar tissue from his original repair. Talk about scared. While they did the surgery they put tubes in his ears. He had been getting lots of ear infections. Lots of time has passed. He started eating and thanks to some pretty drastic measures. When I say drastic, I mean for myself.
Thanks to a feeding specialist and myself we were able to get Matthew’s pump away from him and he started eating. He didn’t really know what to do. Then again neither did I. At any rate, on down the line he swallowed a dime for me. Shortly after he had his tonsils out. All in all Matthew has been hospital free for two years now! I can honestly say he is all boy.
We went on to have two other children, both healthy girls. I can’t sit here and say I didn’t think about all the problems Matthew had when I was pregnant with the next two girls. I didn’t let it stop me though. I just figured I would deal with what God gave me. We have!!
Figures, my one and only son has to be the one and only!
Written by Matthew's mom, Cindy Goembel (Illinois)
1997
My husband, Bob, and I went in for the sonogram together. Everything seemed to be going fine. Then all of a sudden the viewing screen was turned away from us and all these techs came running in. I was very upset. No one would tell us anything. I knew something was wrong. The only thing said to us was that we would have to talk to my doctor. The doctor called the same day wanting me to come in to talk with him.
I went in and the first question out of my mouth was "Is my baby going to die"? He said the baby had internal organs in his chest that could either be a hiatus hernia or CDH. He said he wasn’t sure and told me I would have to have another sonogram in my ninth month. All in all this pregnancy was my best yet—go figure. I went in for my ninth month sonogram only to discover no change. I was then referred to a high-risk doctor.
The following day we saw this doctor. It was at this point with a level two sonogram that we learned all about CDH. The doctor had confirmed that our son definitely had one. We didn’t know what to think; we didn’t even know what CDH was. Well at that point we learned all about it. I had asked him the same question. "Is my baby going to die?" He told me there was a 50/50 chance of survival. Well we thought that was better than nothing.
We were taken down to the NICU unit and introduced to the nurses and doctors that we were going to be taking care of our son. They were all real nice. We also learned about ECMO—which was very scary. We were not sure at that time if our son would require it or not. The nurses said some do, some don’t. We hoped he would not.
The next day my labor induced. I don’t think I need to say how hard that was; forcing a baby to come out who we weren’t sure would live. At that time I was 37 weeks and five days pregnant. I was told it was good that I had a baby previously otherwise induction wouldn’t work. Well, 18 hours later (I was taken off pitocin overnight) Matthew Robert Goembel was born. He was pink and screaming. I can’t tell you how happy we were!!! We had been told there was no way to determine how much lungs he had until birth.
On March 21,1993 Matt had his first surgery. He was only two days old and fighting for his life. He had his hernia repaired. They were able to close it with no patch. The real battle had just begun. Matthew seemed to come through with no complications. He was off his vent in 10 days. Boy! Were we ever glad. He was doing really great until they tried to feed him.
We learned a whole other spectrum---we thought he was going to get fixed and go right home. Ha! They had discovered that Matthew’s stomach had flipped over. This is called volvulus. So, back to surgery we go. He had healed and they tried feeding him again. Nothing would go through and stay down. This time his intestines did the flipping and kinking over. Back to surgery we go. He healed and this time they put a j-tube and a g-tube in. He healed and they tried again. This time scar tissue had grown over his stomach opening. At any rate, he went back in and then he healed. The hospital never found out why.
I talked to Matthew’s doctors and told them I wanted him out of there. They said, "no." I said "yes" and took him anyway. I had already contacted another doctor. This time it was a peds gastroenterologist; he was fantastic! Finally someone to help me. After numerous tests we discovered Matthew had esophagitis so bad that he could not have a nissen done which is what we needed all along. We had to wait nine months for him to heal. We went home and Matt was getting fed through his g-tube.
Matthew went back and had his surgery; it was a huge success. Trying to get him to eat was not successful. He remained on his pump 12 hours a day. No, this is not where the story ends. Matthew ended back up again. He broke down his surgery from constantly retching. Come to find out he could not handle feed tubings. His nissen was repaired and we went home. He was put back on the kangaroo pump (he had one before with his j-tube). Everything seemed to be going smoothly. Well, you would think we could get some good luck by now, huh?
We ended up back at the hospital. This time his stomach had swollen and we didn’t know where it was coming from. After numerous tests they discovered that Matthew’s colon and spleen were kinked over due to scar tissue from his original repair. Talk about scared. While they did the surgery they put tubes in his ears. He had been getting lots of ear infections. Lots of time has passed. He started eating and thanks to some pretty drastic measures. When I say drastic, I mean for myself.
Thanks to a feeding specialist and myself we were able to get Matthew’s pump away from him and he started eating. He didn’t really know what to do. Then again neither did I. At any rate, on down the line he swallowed a dime for me. Shortly after he had his tonsils out. All in all Matthew has been hospital free for two years now! I can honestly say he is all boy.
We went on to have two other children, both healthy girls. I can’t sit here and say I didn’t think about all the problems Matthew had when I was pregnant with the next two girls. I didn’t let it stop me though. I just figured I would deal with what God gave me. We have!!
Figures, my one and only son has to be the one and only!
Written by Matthew's mom, Cindy Goembel (Illinois)
1997