When I joined CHERUBS I will never forget this posting from a woman. She said, "My doctor told me if I did not terminate he would not be my doctor." What followed were other woman claiming the same thing. One doctor was a woman. I could not even imagine a doctor telling me that. My thoughts went to Dr G. and how different my experience was. I felt so bad for these women and so fortunate to have gotten Dr. G.
True to his promise, Dr G. lined up all sort of specialist. We spoke to pediatric surgeons, cardiologist, pulmonologist, neonatologist, and on and on. Everyone was very honest and told us what they could or could not do depending on the situation when he was born. It was such a relief to know exactly what to expect.
We were told about ECMO which they had at our hospital. They explained about possible surgery to repair the hernia. When it was done and when it wasn't. They spoke about doing too much and that only we could decide what was enough. They are doctors and it is their mission to save lives but they would not put our baby through unless operations etc. unless that's what we wanted
Who would have thought their were so many decision to make when you expect your baby to die.
Thursday, December 10, 2009
To terminate or not to terminate, part III. The declaration.
One or two Tuesday's later Dr G gave me more bad news. My baby had a heart defect. They were not sure exactly what it was yet and needed to wait till his heart was a little bigger.
For the third and last time he told me I could terminate. Once again, I did not answer. He asked me if I was making this choice because my baby was expected to die. I told him honestly, I did not know.
Before I left he said something like this to me, "I have had three other women go through this with different problems but the outcome was the same. One of them was very religious and trusted God would make everything better, she was the worse off when her baby died. Another woman refused to acknowledge it was happening, she did not fair very well. The last woman wanted to do everything, she went overboard and nothing she did changed the outcome. She did not do very well either."
Dr G told me he believed in faith and invited us to his church if we did not have one. He also told me we would do U/S weekly until they added no value. To that he added, "since you will continue with the pregnancy I will setup consults with other doctors to answer any questions you have about your baby's conditions".
My parents were staying with me because my Dad underwent open heart surgery. He was very sick and stayed for 5 months. Trying to hide the situation was very difficult so my husband and I decided to go to the coast for the week-end so we could talk.
The drive to the coast is two hours and I don't recall talking at all. I did spend the entire time thinking of what I should do. The next morning I was sitting on the bed in the hotel and we were talking. I said, "I know how much you hate it when I talk about woman's rights but this is going to be one of those times." I have a choice to make and you have one too. My choice and only mine is to terminate or not and I will not terminate. My baby might die but it will not be at my hands. It's your choice to make, whether or not you will stay. No hard feeling because I understand." He was really mad at me and went on and on about fairness and why did what he want, not count. He did not want to raise a handicapped child. He felt we should make the choice together and not doing so was selfish. Well, he was right but the one thing that would not change was that it was my body and I alone was going to make the choice because I alone would have to deal with the emotional consequences.
After my declaration we went to the beach. Ironically to the left of the spot we chose there was an older couple with a son that obviously had Trisomy 21. I said, "let's go talk to them but he said to me, you go talk if you want to, I have nothing to say." He was still mad at me but in retrospect I think part of it was deep down he felt I was right.
I went to talk to the woman. The man was busy with a book and I know what that's like. I told her I was carry a baby with trisomy 21 and was wondering about her son. She told me he was low functioning and mostly just banged his head on the sand but he liked the beach, I had the impression she had no regrets. When I got back, he said to me, "they look miserable". I disagreed but he was just trying to pick a fight so I went silent. Our day at the beach was over.
I neglected to mention when my amnio came back it was positive for Trisomy 21. The earlier FISH test has a higher rate of being wrong.
For the third and last time he told me I could terminate. Once again, I did not answer. He asked me if I was making this choice because my baby was expected to die. I told him honestly, I did not know.
Before I left he said something like this to me, "I have had three other women go through this with different problems but the outcome was the same. One of them was very religious and trusted God would make everything better, she was the worse off when her baby died. Another woman refused to acknowledge it was happening, she did not fair very well. The last woman wanted to do everything, she went overboard and nothing she did changed the outcome. She did not do very well either."
Dr G told me he believed in faith and invited us to his church if we did not have one. He also told me we would do U/S weekly until they added no value. To that he added, "since you will continue with the pregnancy I will setup consults with other doctors to answer any questions you have about your baby's conditions".
My parents were staying with me because my Dad underwent open heart surgery. He was very sick and stayed for 5 months. Trying to hide the situation was very difficult so my husband and I decided to go to the coast for the week-end so we could talk.
The drive to the coast is two hours and I don't recall talking at all. I did spend the entire time thinking of what I should do. The next morning I was sitting on the bed in the hotel and we were talking. I said, "I know how much you hate it when I talk about woman's rights but this is going to be one of those times." I have a choice to make and you have one too. My choice and only mine is to terminate or not and I will not terminate. My baby might die but it will not be at my hands. It's your choice to make, whether or not you will stay. No hard feeling because I understand." He was really mad at me and went on and on about fairness and why did what he want, not count. He did not want to raise a handicapped child. He felt we should make the choice together and not doing so was selfish. Well, he was right but the one thing that would not change was that it was my body and I alone was going to make the choice because I alone would have to deal with the emotional consequences.
After my declaration we went to the beach. Ironically to the left of the spot we chose there was an older couple with a son that obviously had Trisomy 21. I said, "let's go talk to them but he said to me, you go talk if you want to, I have nothing to say." He was still mad at me but in retrospect I think part of it was deep down he felt I was right.
I went to talk to the woman. The man was busy with a book and I know what that's like. I told her I was carry a baby with trisomy 21 and was wondering about her son. She told me he was low functioning and mostly just banged his head on the sand but he liked the beach, I had the impression she had no regrets. When I got back, he said to me, "they look miserable". I disagreed but he was just trying to pick a fight so I went silent. Our day at the beach was over.
I neglected to mention when my amnio came back it was positive for Trisomy 21. The earlier FISH test has a higher rate of being wrong.
To terminate or not to terminate, part II. Late term abortion.
The next shock was getting the amnio results back. I was told my baby had Trisomy 21. The FISH test had produced a negative on Trisomy 21. The FISH test is not 100%, the amnio is really the definitive test and it was positive. Now what?
So once again, Dr G told me I could get a late abortion. And once again, I said nothing. He said they could not do it but there was a place in Kansas.
The man in my life wanted me to terminate. At least that's what he thought at the time.
When I got home I looked up late term abortions out of curiosity. Before I continue, let me say that I am pro-choice. I think every woman should be able to make the right choice for her at any given time. Early abortions are something very different from a late term abortion. You don't look pregnant and usually you do not feel pregnant. Circumstances may make the choice for you. I do not advocate abortions as birth control. Being pregnant, giving birth or not giving birth is a life changing experience for every woman. and it should be considered carefully.
So back to the late term abortions. They are indicated in situations like mine. I read about the procedure and here is what stuck in my mind. They would induce me and then use something to take the baby out piece by piece. I was so revolted I never even considered looking into it further.
My baby was moving and I could feel him, I looked very pregnant since it started as a twin pregnancy. I could not, would not, kill my child. I did believe he would die, it just wouldn't be my choice.
That does not mean it is not right for some women. We are all different. For some, carrying a baby to term that will most certainly die is too hard. The Mother must be considered. What is the point of carrying to term if the Mother does not survive emotionally? For others, like me, I would not survive if I terminated. Both choices are right. My choice was my survival.
So once again, Dr G told me I could get a late abortion. And once again, I said nothing. He said they could not do it but there was a place in Kansas.
The man in my life wanted me to terminate. At least that's what he thought at the time.
When I got home I looked up late term abortions out of curiosity. Before I continue, let me say that I am pro-choice. I think every woman should be able to make the right choice for her at any given time. Early abortions are something very different from a late term abortion. You don't look pregnant and usually you do not feel pregnant. Circumstances may make the choice for you. I do not advocate abortions as birth control. Being pregnant, giving birth or not giving birth is a life changing experience for every woman. and it should be considered carefully.
So back to the late term abortions. They are indicated in situations like mine. I read about the procedure and here is what stuck in my mind. They would induce me and then use something to take the baby out piece by piece. I was so revolted I never even considered looking into it further.
My baby was moving and I could feel him, I looked very pregnant since it started as a twin pregnancy. I could not, would not, kill my child. I did believe he would die, it just wouldn't be my choice.
That does not mean it is not right for some women. We are all different. For some, carrying a baby to term that will most certainly die is too hard. The Mother must be considered. What is the point of carrying to term if the Mother does not survive emotionally? For others, like me, I would not survive if I terminated. Both choices are right. My choice was my survival.
To terminate or not to terminate, part I
After the Diaphragmatic Hernia was found I was told my baby would not live. Dr G would not commit to 100%. He said, as a young Doctor he had made that statement once and someone proved him wrong. That was the only reason he would not say 100%.
Miracles do happen!
We knew now my baby did not have fetal hydrops so no one was so sure anymore that I would miscarry any time soon. Dr G told me that under the circumstances I could terminate even though I was way past 12 weeks. I did not say one word. After an awkward silence he said, "no matter what you decide I will be your doctor." At that time I had no idea how powerful those words were.
When you talk to a genetic counselor it's very easy to decide to terminate should your baby have any number of health issues because you are not really in that situation. I had talked about it and decided I would if something was wrong that would affect the quality of life of my baby. Boy was I in for some big shocks.
Never under estimate the power of a Mother's love.
Miracles do happen!
We knew now my baby did not have fetal hydrops so no one was so sure anymore that I would miscarry any time soon. Dr G told me that under the circumstances I could terminate even though I was way past 12 weeks. I did not say one word. After an awkward silence he said, "no matter what you decide I will be your doctor." At that time I had no idea how powerful those words were.
When you talk to a genetic counselor it's very easy to decide to terminate should your baby have any number of health issues because you are not really in that situation. I had talked about it and decided I would if something was wrong that would affect the quality of life of my baby. Boy was I in for some big shocks.
Never under estimate the power of a Mother's love.
Thursday, October 22, 2009
What is a Congenital Diaphragmatic Hernia?
http://www.childrenshospital.org/az/Site476/mainpageS476P0.html
http://www.cdhsupport.org/cdh/overview.php
http://www.nlm.nih.gov/medlineplus/ency/article/001135.htm
Ironically when I was pregnant the survival rate for CDH was 20% and now it is 80%. Many advances have been made like exit to ECMO and fetal surgery. The one thing that has not changed, there is no cure and no one knows why it happens.
Diaphragmatic hernia
A diaphragmatic hernia is a birth defect in which there is an abnormal opening in the diaphragm, the muscle that helps you breathe. The opening allows part of the organs from the belly (stomach, spleen, liver, and intestines) to go up into the chest cavity near the lungs.
Causes
A diaphragmatic hernia is caused by the improper joining of structures during fetal development. As a result, the abdominal organs such as the stomach, small intestine, spleen, part of the liver, and the kidney appear in the chest cavity. The lung tissue on the affected side is thus not allowed to completely develop.
Congenital diaphragmatic hernia is seen in 1 out of every 2,200 to 5,000 live births. Most affect the left side. Having a parent or sibling with the condition slightly increases your risk.
Symptoms
Severe breathing difficulty usually develops shortly after the baby is born, because of ineffective movement of the diaphragm and crowding of the lung tissue, which causes collapse. The reason why this occurs is not known.
Other symptoms include:
Bluish colored skin due to lack of oxygen
Rapid breathing (tachypnea)
Fast heart rate (tachycardia)
Exams and Tests
The pregnant mother may have excessive amounts of amniotic fluid. Fetal ultrasound may show abdominal contents in the chest cavity.
Examination of the infant shows:
Irregular chest movements
Absent breath sounds on affected side
Bowel sounds heard in the chest
Abdomen feels less full on examination by touch (palpation)
A chest x-ray may show abdominal organs in chest cavity.
Treatment
A diaphragmatic hernia is an emergency that requires surgery. Surgery is done to place the abdominal organs into the proper position and repair the opening in the diaphragm.
See: Diaphragmatic hernia repair - congenital
The infant will need breathing support until he or she recovers from surgery. Some infants are placed on a heart/lung bypass machine, which gives the lungs a chance to recover and expand after surgery.
If a diaphragmatic hernia is diagnosed during pregnancy (around 24 to 28 weeks), fetal surgery may be considered.
Outlook (Prognosis)
Congenital diaphragmatic hernia is a very serious disorder. The outcome of surgery depends on how well your baby's lungs have developed. Usually the outlook is very good for infants who have enough lung tissue.
With advances in neonatal and surgical care, survival is now greater than 80%.
http://www.cdhsupport.org/cdh/overview.php
http://www.nlm.nih.gov/medlineplus/ency/article/001135.htm
Ironically when I was pregnant the survival rate for CDH was 20% and now it is 80%. Many advances have been made like exit to ECMO and fetal surgery. The one thing that has not changed, there is no cure and no one knows why it happens.
Diaphragmatic hernia
A diaphragmatic hernia is a birth defect in which there is an abnormal opening in the diaphragm, the muscle that helps you breathe. The opening allows part of the organs from the belly (stomach, spleen, liver, and intestines) to go up into the chest cavity near the lungs.
Causes
A diaphragmatic hernia is caused by the improper joining of structures during fetal development. As a result, the abdominal organs such as the stomach, small intestine, spleen, part of the liver, and the kidney appear in the chest cavity. The lung tissue on the affected side is thus not allowed to completely develop.
Congenital diaphragmatic hernia is seen in 1 out of every 2,200 to 5,000 live births. Most affect the left side. Having a parent or sibling with the condition slightly increases your risk.
Symptoms
Severe breathing difficulty usually develops shortly after the baby is born, because of ineffective movement of the diaphragm and crowding of the lung tissue, which causes collapse. The reason why this occurs is not known.
Other symptoms include:
Bluish colored skin due to lack of oxygen
Rapid breathing (tachypnea)
Fast heart rate (tachycardia)
Exams and Tests
The pregnant mother may have excessive amounts of amniotic fluid. Fetal ultrasound may show abdominal contents in the chest cavity.
Examination of the infant shows:
Irregular chest movements
Absent breath sounds on affected side
Bowel sounds heard in the chest
Abdomen feels less full on examination by touch (palpation)
A chest x-ray may show abdominal organs in chest cavity.
Treatment
A diaphragmatic hernia is an emergency that requires surgery. Surgery is done to place the abdominal organs into the proper position and repair the opening in the diaphragm.
See: Diaphragmatic hernia repair - congenital
The infant will need breathing support until he or she recovers from surgery. Some infants are placed on a heart/lung bypass machine, which gives the lungs a chance to recover and expand after surgery.
If a diaphragmatic hernia is diagnosed during pregnancy (around 24 to 28 weeks), fetal surgery may be considered.
Outlook (Prognosis)
Congenital diaphragmatic hernia is a very serious disorder. The outcome of surgery depends on how well your baby's lungs have developed. Usually the outlook is very good for infants who have enough lung tissue.
With advances in neonatal and surgical care, survival is now greater than 80%.
Wednesday, September 23, 2009
Diaphragmatic Hernia
On one of those many Tuesday ultrasounds Dr. G found the real problem or maybe I should say one of the real problems. My baby had a diaphragmatic hernia. A WHAT? How bad could a hernia be? Aren't they all fixable? Despite my initial thought this was not good news. This was no regualr run of the mill hernia. So many problems could result.
My baby's heart was on the right side. It was moved by the hernia. His stomach was in his chest and that forced his heart over. Since the lungs are the last thing to grow fully his lungs would not have room to grow. Wow, I was not sure how much more bad news I could take.
I went home and straight to my computer. There was not much about CDH (Congenital Diaphragmatic Hernia) but I did find one support group called CHERUBS. The group was made up of people that had lost there children to this awful birth defect and to those dealing with the health issues that came with survival. I requested membership by explaining that even though I had not lost my baby yet his survival chance was 1% so I was already grieving.
My baby's heart was on the right side. It was moved by the hernia. His stomach was in his chest and that forced his heart over. Since the lungs are the last thing to grow fully his lungs would not have room to grow. Wow, I was not sure how much more bad news I could take.
I went home and straight to my computer. There was not much about CDH (Congenital Diaphragmatic Hernia) but I did find one support group called CHERUBS. The group was made up of people that had lost there children to this awful birth defect and to those dealing with the health issues that came with survival. I requested membership by explaining that even though I had not lost my baby yet his survival chance was 1% so I was already grieving.
Am I depressed?
The next Tuesday I was still leaking fluid but at a much slower rate. An ultrasound was done to see what things looked like. He was still there. The rest is a blur. We simply waited for the heartbeat to stop.
As Tuesday's came and went several things happened. Dr. G wanted to put me on an anti-depressant at one appt and I refused. He told me it was normal to be depressed, anyone would be. I wasn't sure what depression was, I knew I was very sad. I cried all the time. He kept pressing and got me to agree that I talk to 2 people and if they thought I was drepressed I would at least try.
I spoke to two people, I guess a therapist or psychologist and maybe a social worker. They asked me how I felt about group therapy. I told them it would not work because I would not say anything. That's all I recall. I went back to Dr G and he put me on prozac and sent me to a therapist. Now I know what you are thinking because I had all those thoughts too. PROZAC!!!!! Is he kidding me, that makes people kill people. He explained that it was the one OB's knew about giving during pregnancy. Hmmm. It took me about 3 weeks to try the prozac. It made me so sick I never took it again. So I was sent to a psychiatist so she could figure out what to give me. :-) That turned into an adventure I'll tell you about later.
As Tuesday's came and went several things happened. Dr. G wanted to put me on an anti-depressant at one appt and I refused. He told me it was normal to be depressed, anyone would be. I wasn't sure what depression was, I knew I was very sad. I cried all the time. He kept pressing and got me to agree that I talk to 2 people and if they thought I was drepressed I would at least try.
I spoke to two people, I guess a therapist or psychologist and maybe a social worker. They asked me how I felt about group therapy. I told them it would not work because I would not say anything. That's all I recall. I went back to Dr G and he put me on prozac and sent me to a therapist. Now I know what you are thinking because I had all those thoughts too. PROZAC!!!!! Is he kidding me, that makes people kill people. He explained that it was the one OB's knew about giving during pregnancy. Hmmm. It took me about 3 weeks to try the prozac. It made me so sick I never took it again. So I was sent to a psychiatist so she could figure out what to give me. :-) That turned into an adventure I'll tell you about later.
Subscribe to:
Posts (Atom)