Extra-corporeal membrane oxygenation
ECMO stands for a treatment that uses a pump to circulate blood through an artificial lung back into the bloodstream of a very ill baby. This system provides heart-lung bypass support outside of the baby’s body.
WHY IS ECMO USED?
ECMO is used in infants who are extremely ill due to breathing or heart problems. The purpose of ECMO is to provide enough oxygen to the baby while allowing time for the lungs and heart to rest or heal.
The most common conditions that may require ECMO are:
Congenital diaphragmatic hernia (CDH)
Heart malformations
Meconium aspiration syndrome (MAS)
Pneumonia
Severe air leak problems
Severe pulmonary hypertension
It may also be used during the recovery period after heart surgery.
HOW IS A BABY PLACED ON ECMO?
Starting ECMO requires a large team of caregivers to stabilize the baby, as well as the careful set-up and priming of the ECMO pump with fluid and blood. Surgery is performed to attach the ECMO pump to the baby through catheters that are placed into large blood vessels in the baby's neck.
WHAT ARE THE RISKS OF ECMO?
First, because babies who are considered for ECMO are very ill, they are at high risk for long-term problems, including death. In addition to the already high-risk situation, once the baby is placed on ECMO, additional risks include:
Bleeding
Blood clot formation
Infection
Transfusion problems
Rarely, the pump can have mechanical problems (tube breaks, pump stops), which can harm the baby.
However, most babies who need ECMO would probably die if it were not used.
For more information: http://www.nlm.nih.gov/medlineplus/ency/article/007234.htm
Thursday, December 10, 2009
What is polyhydramnios?
Polyhydramnios: Too Much Amniotic Fluid
When a woman has polyhydramnios, the level of amniotic fluid surrounding the baby is too high.
What You Need to Know About Polyhydramnios
Polyhydramnios (too much amniotic fluid) occurs in about 2 out of 100 of pregnancies. Most cases are mild and result from a slow buildup of excess fluid in the second half of pregnancy. But in a few cases, fluid builds up as early as the 16th week of pregnancy. This usually leads to very early delivery.
Polyhydramnios is diagnosed with ultrasound. Medical experts do not fully understand what causes this condition. In 2 out 3 cases, the cause is not known. Here are two of the best-known causes:
Birth defects in the baby that affect the ability to swallow. Normally, when the fetus swallows, the level of amniotic fluid goes down a bit. This helps to balance out the increase in fluid caused by fetal urination.
Heart defects in the baby.
For more information: http://www.marchofdimes.com/pnhec/188_1044.asp
When a woman has polyhydramnios, the level of amniotic fluid surrounding the baby is too high.
What You Need to Know About Polyhydramnios
Polyhydramnios (too much amniotic fluid) occurs in about 2 out of 100 of pregnancies. Most cases are mild and result from a slow buildup of excess fluid in the second half of pregnancy. But in a few cases, fluid builds up as early as the 16th week of pregnancy. This usually leads to very early delivery.
Polyhydramnios is diagnosed with ultrasound. Medical experts do not fully understand what causes this condition. In 2 out 3 cases, the cause is not known. Here are two of the best-known causes:
Birth defects in the baby that affect the ability to swallow. Normally, when the fetus swallows, the level of amniotic fluid goes down a bit. This helps to balance out the increase in fluid caused by fetal urination.
Heart defects in the baby.
For more information: http://www.marchofdimes.com/pnhec/188_1044.asp
My baby and me.
By now they had found a combination of drugs to fight my depression. I was talking Effexor and something else I no longer recall. So I went from not sleeping and crying all the time, to not crying all the time. It might not sound like much but it was a huge improvement. I use to call it the "no more tears pills".
I was huge because of the polyhydramnios. I use to get in the walk-in shower and sit in the corner with the water falling down on me. It is there that I pondered what to do. I struggled to find answers to the doctors most important question; how much did I want them to do.
Sometimes I just cried in that corner. Other times I laughed. My baby moved a lot and he seemed to really like the water. The movement would make me laugh. I talked to him. I knew this time was all I would have with him so I had to make the best of it. With my other children by this time I was miserable and wonder why I had to be the woman. Why couldn't men give birth and go through this :-)? I complained like most women. With this pregnancy I cherished everyday I stayed pregnant.
The polyhydramnios was good and bad. I was huge and had problems because of it but at the same time all the water allowed my baby to be active up until his birth. This was a good thing, to me.
I was huge because of the polyhydramnios. I use to get in the walk-in shower and sit in the corner with the water falling down on me. It is there that I pondered what to do. I struggled to find answers to the doctors most important question; how much did I want them to do.
Sometimes I just cried in that corner. Other times I laughed. My baby moved a lot and he seemed to really like the water. The movement would make me laugh. I talked to him. I knew this time was all I would have with him so I had to make the best of it. With my other children by this time I was miserable and wonder why I had to be the woman. Why couldn't men give birth and go through this :-)? I complained like most women. With this pregnancy I cherished everyday I stayed pregnant.
The polyhydramnios was good and bad. I was huge and had problems because of it but at the same time all the water allowed my baby to be active up until his birth. This was a good thing, to me.
Doctors, Doctors, Doctors
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.
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.
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.
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