Jamandspoon
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Thinking of you and your family xxx
Tetralogy of Fallot - Hysterical - Updates on page 3 and 5
- Thread starter TMonster
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October2013
Mommy to a baby girl
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I don't even know what to say.... 
I am so sorry you are dealing with this. Please keep us updated on what's going on..
I am so sorry you are dealing with this. Please keep us updated on what's going on..
Housecat
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I'm so sorry you are dealing with this, it must be very difficult for you. My husband has Tetralogy of Fallots. He was diagnosed at birth and he first had surgery at 3 years old, and then again at 23 years old. He may need another surgery later in his life, but for all this, he has a good quality of life and leads a normal life. I wish you and your LO all the best xx
TMonster
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Thank you so much everyone for your support. This past week has been completely agonizing for me. I just got a call back today with my amnio results and the baby has no chromosomal abnormalities including DiGeorge.
I know I have a long road ahead of me dealing with the heart issue. Its not just the TET but Pulmonary Atresia so she will need a shunt right away and eventually a graft and donor valve but the prognosis looks good and I know she will be a strong and brave little girl. It will be hard but I know we can get through it.
I will probably PM some of you who have it or are familiar with it to discuss it if you don't mind. I just want to cry now that I got my test results back and have a better idea of what I am dealing with.
I know I have a long road ahead of me dealing with the heart issue. Its not just the TET but Pulmonary Atresia so she will need a shunt right away and eventually a graft and donor valve but the prognosis looks good and I know she will be a strong and brave little girl. It will be hard but I know we can get through it.
I will probably PM some of you who have it or are familiar with it to discuss it if you don't mind. I just want to cry now that I got my test results back and have a better idea of what I am dealing with.
Proserpina
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Congratulations. I'm so glad to hear that your daughter's difficulties seem to be limited to physical heart problems. That is still rough, but modern medicine is amazing. You can both get through this.
Best of luck to both of you.
LadyMuck80
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That must be a weight off your mind. At least you now know what you have to deal with. How is your DH feeling about it all now?
zanDark
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that's wonderful news! 
Like prosperina said, medicine nowadays is amazing and can work wonders. It will be hard for you and your LO in regards to surgery, but having caught it this early means that you and the doctors can all plan ahead together and get ready to give her all the help she needs to get better!
Hang in there mama
try to get some rest during the weekend and take care of yourself 
TMonster
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DH is relieved. It caused a lot of tension between us. He would have left me if I would have kept her with DiGeorge and I was so torn about the entire issue. I mean some people have DiGeorge and never know it due to symptoms that are so mild but at the end of the day his concerns werent so much about raising a child with DiGeorge but about the lifelong commitment that is required and who would take care of her when she is older? 40% of DiGeorge cases develop schizophrenia in adulthood, would she need to be institutionalized? would she be subjected to a life of suffering?
The issue with his cousin is he is 55 with a low IQ, mental illness, mild physical deformities, severe cerebral palsy and it is truly scary. I mean he is sweet and loving but at 55 he is about as developed as a 7 year old. He has severe sleep apnea but refuses to wear a c-pap, fusses about going to the doctors office, throws tantrums, plays games like a child, for example he runs out of the house and hides around the building.
His mother is 77 and suffering from Parkinsons and can barely handle him at this point and no one wants the responsibility when she passes away. It breaks her heart to have to have him institutionalized but he really cannot live independently.
I also have a step sister suffering from severe bipolar disorder. She ended up developing a drug addition, was extremely suicidal, has been in and out of rehab, in and out of prison, she is on SSDI now due to her bipolar disorder and she has reached a point where no one can deal with her. Her mother kicked her out until she agreed to go to rehab (as per the advice of her therapist) her father wont let her in the house. Last time she was over at my moms house she ended up stealing ALL of my mothers jewelry including her wedding ring and a blank check from her father that she tried to cash. She sold the jewelry to use for drug money. She is 33 years old and a burden on her family and society. When she takes her medication she does okay but when she doesnt she goes insane. She tried teaching our half brother, who was 10 at the time, how to have sex and took off all her clothes and tried to get him to do the same and teach him using pillows. She spilled a cup of hot coffee on her sister who was driving the car they were both in because she disagreed with her about directions. She is dangerous and its scary and we still love her but its really hard.
When we discussed having a child who has a high likelihood of having these types of problems as an adult on top of a very complex heart condition which will require a lifetime of monitoring it was mind numbing.
Its one thing to raise a child in a loving home but its another to be elderly and know that one day you wont be there for your now adult child who can't take care of themselves. That isnt true for all or even many cases but when dealing with so many complex issues it becomes truly terrifying. I mean he just kept asking me how could you do that to her? You would be subjecting her to a lifetime of suffering on top of the immune system problems and everything else she would have to go through. I just kept saying she is my baby. What if its mild? What if its mostly just the heart condition? What if you or I have the condition and its so mild we don't know it? We could have a perfectly normal child and she can develop autism or cancer or a learning disability or mental ******ation or get hit by a truck. He just kept saying there is a difference when dealing with 4 or 5 standard deviation events and knowing, going into something that it was extremely likely to cause her pain and stress and possibly be fatal early on. The heart problems would be more difficult to heal because she would have a compromised immune system and heal more slowly.
Then I asked him if he thought about the psychological damage terminating a pregnancy at this stage would do to me.
We had some brutal discussions which did not end well. We agreed to not think about it until we got our results back. Fortunately now we don't have to continue that horrible discussion. Its something really scary to have to face.
The issue with his cousin is he is 55 with a low IQ, mental illness, mild physical deformities, severe cerebral palsy and it is truly scary. I mean he is sweet and loving but at 55 he is about as developed as a 7 year old. He has severe sleep apnea but refuses to wear a c-pap, fusses about going to the doctors office, throws tantrums, plays games like a child, for example he runs out of the house and hides around the building.
His mother is 77 and suffering from Parkinsons and can barely handle him at this point and no one wants the responsibility when she passes away. It breaks her heart to have to have him institutionalized but he really cannot live independently.
I also have a step sister suffering from severe bipolar disorder. She ended up developing a drug addition, was extremely suicidal, has been in and out of rehab, in and out of prison, she is on SSDI now due to her bipolar disorder and she has reached a point where no one can deal with her. Her mother kicked her out until she agreed to go to rehab (as per the advice of her therapist) her father wont let her in the house. Last time she was over at my moms house she ended up stealing ALL of my mothers jewelry including her wedding ring and a blank check from her father that she tried to cash. She sold the jewelry to use for drug money. She is 33 years old and a burden on her family and society. When she takes her medication she does okay but when she doesnt she goes insane. She tried teaching our half brother, who was 10 at the time, how to have sex and took off all her clothes and tried to get him to do the same and teach him using pillows. She spilled a cup of hot coffee on her sister who was driving the car they were both in because she disagreed with her about directions. She is dangerous and its scary and we still love her but its really hard.
When we discussed having a child who has a high likelihood of having these types of problems as an adult on top of a very complex heart condition which will require a lifetime of monitoring it was mind numbing.
Its one thing to raise a child in a loving home but its another to be elderly and know that one day you wont be there for your now adult child who can't take care of themselves. That isnt true for all or even many cases but when dealing with so many complex issues it becomes truly terrifying. I mean he just kept asking me how could you do that to her? You would be subjecting her to a lifetime of suffering on top of the immune system problems and everything else she would have to go through. I just kept saying she is my baby. What if its mild? What if its mostly just the heart condition? What if you or I have the condition and its so mild we don't know it? We could have a perfectly normal child and she can develop autism or cancer or a learning disability or mental ******ation or get hit by a truck. He just kept saying there is a difference when dealing with 4 or 5 standard deviation events and knowing, going into something that it was extremely likely to cause her pain and stress and possibly be fatal early on. The heart problems would be more difficult to heal because she would have a compromised immune system and heal more slowly.
Then I asked him if he thought about the psychological damage terminating a pregnancy at this stage would do to me.
We had some brutal discussions which did not end well. We agreed to not think about it until we got our results back. Fortunately now we don't have to continue that horrible discussion. Its something really scary to have to face.
zanDark
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I can't even imagine what it was like having those conversations with your DH it must have been so difficult for both of you!! Put it behind you and try to relax as much as you possibly can under the circumstances.
All this stress isn't helping you or your LO at all. How does he feel about her heart problems? is that something he can cope with??
TMonster
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Yes, the heart problem he is fully on board with. He has always said that physical defects are fine and manageable. I mean he has one himself and while he may have had a bit of a tougher time, at the end of the day cognitive impairment isnt something that he had to deal with. Its when we start getting into complex neurological issues where he gets scared and I mean I can understand it. Dealing with a child who is a paraplegic brings about its own complex set of issues but at least you have some kind of idea with what you are dealing with.
The other really scary thing about DiGeorge is that its not Down's. With Down's you sort of have an idea what your child will be like. Sure there is a spectrum and there are a host of other health issues that might be related to it but with DiGeorge you have no clue. You could have a case that is so mild you would never know your child had it without a test and they could live out a full, normal, independent life or you can get a very severe case. There is no way of knowing and you just end up with numbers and statistics. 90% have learning disabilities but there is a huge spectrum. Most have borderline normal IQs but that doesnt help much either. 40% develop schizophrenia at some point in their life. I mean you look at these stats and MANY more and then you think about the complex heart problem they will face throughout their life and it truly is mind blowing. The case is really a lot more difficult. You don't have people who suffer from Down's and don't know it. I am just glad I am not stressing about it anymore. I love this baby so much I don't think I could have parted with her no matter what.
The other really scary thing about DiGeorge is that its not Down's. With Down's you sort of have an idea what your child will be like. Sure there is a spectrum and there are a host of other health issues that might be related to it but with DiGeorge you have no clue. You could have a case that is so mild you would never know your child had it without a test and they could live out a full, normal, independent life or you can get a very severe case. There is no way of knowing and you just end up with numbers and statistics. 90% have learning disabilities but there is a huge spectrum. Most have borderline normal IQs but that doesnt help much either. 40% develop schizophrenia at some point in their life. I mean you look at these stats and MANY more and then you think about the complex heart problem they will face throughout their life and it truly is mind blowing. The case is really a lot more difficult. You don't have people who suffer from Down's and don't know it. I am just glad I am not stressing about it anymore. I love this baby so much I don't think I could have parted with her no matter what.
Nicolalove353
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You are going to be a great and loving mom! I am so, so happy about your news! I am really happy that your DH has come around a bit and hopefully he can now be the support you and your baby needs. Heart problems are not easy to deal with but like someone said, modern medicine has come a long way and they do amazing things now. I am really do happy. You have a long road ahead of you but just take one day at a time and you will be surprised how fast time flies by.
zanDark
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It's great that he's on board with the issues at hand
You're going to need to support each other through it! I understand the fear of having a child that won't be able to take care of themselves as they grow older. You have to deal with the heartache and pain of what will become of them once you're gone and who will take care of them 
such sad situations I wish no one would have to deal with! It's scary and heartbreaking when the issues are so severe that they can't function!
As far as being autistic of suffering from being bipolar or schizophrenic, these are things that can happen at any time. I have a few bipolar friends, and while they do struggle at times, modern medication can help them lead normal and functioning lives without having to deal with most of the symptoms of their disease. A lot of people suffer from mental diseases and you can't even tell most of the time!
Thankfully you don't have to face making a decision between your DH and your LO and you can face whatever lies ahead together
You're going to need to support each other through it!
I understand the fear of having a child that won't be able to take care of themselves as they grow older. You have to deal with the heartache and pain of what will become of them once you're gone and who will take care of them such sad situations I wish no one would have to deal with! It's scary and heartbreaking when the issues are so severe that they can't function! As far as being autistic of suffering from being bipolar or schizophrenic, these are things that can happen at any time. I have a few bipolar friends, and while they do struggle at times, modern medication can help them lead normal and functioning lives without having to deal with most of the symptoms of their disease. A lot of people suffer from mental diseases and you can't even tell most of the time!
Thankfully you don't have to face making a decision between your DH and your LO and you can face whatever lies ahead together
LadyMuck80
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Wow - TMonster, you guys have been through so much. I can see why your DH was so terrified - what an awful situation. Your mind immediately goes to worst case scenarios. I'm glad for you both that the genetic conditions have been taken off the table. It's good that you and your DH can talk to each other (even if the conversations don't always resolve themselves at the time). Communication is so important in difficult times.
I really hope that the rest of your pregnancy is less stressful. Take care of yourself.
I really hope that the rest of your pregnancy is less stressful. Take care of yourself.
