What is an ECMO Machine?

I was recently pregnant and on the ecmo machine for approximately 30days and thanks to the wonderful doctors at university hospital, my baby and I survived. I mean, it is still a struggle since I've come off of it. I have some nerve damage in my right hand and I'm learning how to walk again because of lying down for so long not moving. I have to rebuild my strength, but I thank God for letting me see another day to be with my family.

My grandson has now been on ECMO for 138 days. He has overcome every complication that has arisen. He is truly a miracle at this point. He is only 22 months old.

My sister-in-law has been in the ICU for 36 days battling sepsis and then a severe case of ARDS. She has now been on ECMO for 18 days. They were unsuccessful at weaning her from the ECMO machine on day 14 so she was placed on ECMO again a short while later. I am praying that she continues to improve and will be successfully weaned off ECMO soon. Please pray for her recovery and ECMO survivors continue to post your stories. They give hope to those in need.

Our son survived well over 100 days on ECMO. Look for him in medical journals published from Boston Children's Hospital.

My 28 year old son was put on ECMO after having ARDS (adult respiratory distress syndrome) He had aspiration pneumonitis/pneumonia. He was on this for four days. They removed the ECMO and the next day, weaned him off vent. He walked out of the KU medical center the next Friday. This was an awesome team of doctors and nurses who saved my son's life. Had he ended up anywhere else he would not be alive today!

It was an awesome use of this technology because it was developed for neonatal patients with lung and heart problems! Adult use is very limited. It's used only eight or 10 times a year at Kansas University Hospital.

My infant son, who is in the children's hospital in San Francisco, was taken off after about a week. I was tricked by the attending doctors by saying that they want to see how my son will perform without ECMO, and that they would only turn the machine off but they wouldn't take it it off.

My son was doing well for the first hour, and his oxygen level was good. During that hour, they told me that my son was doing well without the ECMO machine and that they were going to remove the machine.

Within a couple of hours, his oxygen level started going down and ultimately, my infant son passed away. I am very upset at UCSF for not being upfront with me about their protocol about the ECMO machine. So watch out parents. Don't let them trick you also.

Just wanted to say that I was put on ECMO at two weeks old from meconium aspiration. I had a very low chance of surviving. I'm now almost 20 years old and am perfectly healthy. I don't have a pulse on the right side of my neck where I also have a large scar from the surgery, but that just makes for a good conversation topic.

I am 25 years old. I was placed on ECMO soon after birth. Health wise, I am great. No pulse on the right side of my neck but otherwise, I'm great.

My baby daughter went on ECMO at two weeks old. She was born healthy but quickly got hit by a virus that caused meningitis and myocarditis among other things. I believe her consultants took a massive calculated risk with it but it was her only chance. After five days, her heart had recovered enough for her to come off it, and now at two months old, she is thriving and so strong I can't believe she's the same child. It's early days but this machine saved her life.

We are in the UK and so lucky to have an amazing NHS and to live in the 'right' part of Britain where this machine is used. Without it, and the amazing expert staff at her hospital, I am certain she would not be here now. There is no way I would've refused her this treatment.

Many hospitals have a strict time limit that they will allow a patient to remain on ECMO for (I often hear two weeks). I believe if a hospital has a strict rule or time limit that they will not break no matter the circumstances, you may want to look for another hospital, because patients should be treated on a patient by patient basis - each case is different.

I agree with the poster above that the patient should be on ECMO for as long as the benefits outweigh the risks/consequences. I have seen CDH babies on ECMO for more than a month who then go on to be successfully weaned off ECMO and lead completely normal and developmentally appropriate lives. One of these babies was in the hospital with us. She was on ECMO for approximately 30 days. When he parents were researching hospitals prior to her birth due to her severe CDH condition, they asked one hospital how long their baby could be on ECMO and they stated strongly "no more than two weeks." When they asked Dr. Kays at UF/Shands, he said "for as long as it takes."

The parents picked UF/Shands and because of that, the beautiful baby went home healthy at three months and is now a healthy four year old. My baby was only on ECMO for three days, and it is tough to look at - but it's a miracle machine. And she is now a healthy, perfect four year old. There is hope. Never lose hope.

I was on an ECMO machine just four weeks ago. I' m now at home and hopefully will be returning to work shortly. I'm steadily getting back to normal strength, although I am experiencing several areas of numbness on my legs, face and trunk of my body.

I'm shocked at the comment from the ECMO registered nurse. Of course, some people 'don't do well' on ECMO, because it is most used as a last resort for very sick patients. I consider myself very, very lucky to have received the treatment and care from a dedicated staff, without whom I would definitely not be here. In just a few short months, I hope to have gone from death's door to a full recovery. --Gordy, UK

Two years ago my 18 year old brother caught the chicken pox, and it caused so much damage to his organs he had a 10 percent chance of survival. They transferred him from Dunedin to Auckland (New Zealand) and put him on the ECMO machine for four days. It absolutely saved his life. If it wasn't for the ECMO, he would be dead.

My daughter age 19, who weighs less than 100 pounds, is has just been taken off ecmo. She was doing well and she was just herself with a machine. The machine faulted the other day and they had to manually crank it for a while. Now her body is not the same. Her speech is not the same. Our daughter is not the same but is still alive. I am happy with that but I would love to know what is going on with the rest of her. They say no stroke and no seizures. Does anyone have a guess?

My daughter was born with severe persistent pulmonary hupertension of the newborn, and was placed on ECMO the day after she was born. She was on ECMO for five days and on a ventilator for two weeks after. The ECMO truly saved her life, because she was desatting on the high frequency ventilator with max settings. It was a traumatic one month for her and us, but she is home now with us!

I know that there are risks involved, but at the time, all you want is for your child to live. Our baby is now five months old and doing well (except for some feeding issues). Only time will tell what the long term effects are. But right now she is a happy and otherwise healthy baby.

My daughter was placed on Ecmo at the age of 12 years old for an unknown heart (VTach). She was on it for seven days. This saved my daughter. She is now 14 years old and is doing well. Does anyone know of the side effects of being on ECMO at this age? Her legs cramp a lot and she has pain in her stomach and back and her legs go numb a lot. Please direct me to information. This machine was our blessing but everyone is different.

ECMO is truly an amazing science! Without it many patients would not have survived. Science is helping us to improve the ECMO treatment immensely. I look forward to what we will be able to do in the future! Our institution has a great success rate and I am brought to tears many times when I get to see a patient walk out of the hospital who might otherwise have not lived.

My daughter was put on ECMO shortly after birth. She was born at 37 1/2 weeks with breathing difficulties which turned into Pulmonary Hypertension. She was on ECMO for eight days and did incredibly well! Before being put on ECMO she had a less than 5 percent chance. On day eight, she was weaned off. We were warned that she would have hearing problems, problems with feeding, and developmental delays. She is now 13 months old and is advanced for her age and so incredibly strong. She is a miracle. She never had hearing or feeding issues and has been walking since she was 11 months old.

ECMO truly did save her life and we would not have her today if it were not for that incredible machine. There are risks (as with anything) but if you are a parent who has a child who needs to be put on ECMO, please make the wise decision to put them on this machine. Don't let the risks scare you. What do you have to lose? Our daughter had no chance at all and now she is a living miracle!

They life flighted my son a few hours after i had him. he has pphn. They took him to put him on the ecmo machine. After being told everything that would and could go wrong i decided to bring him home to live what life he had left. When he got to the hospital he made a turn around and never needed it. He will be home friday for the first time, and you would never know i planned his funeral a mouth ago. That wasn't the life my son was meant to live if they had to put him on that machine.

My son was on ECMO for RDS way back in 1989. Seven days on ECMO starting on day two, then home on day 21. Another scare at two months with RSV, but that was more or less the end of it. One thing for ECMO parents to watch out for is falling behind academically, starting around age 10 - 11. Be proactive. I didn't realize it was happening until too late.

My son was put on Ecmo two days after he was born due to Meconium aspiration, persistent pulmonary hypertension of the new born, sepsis, hypotension, and pneumothorax. He was life flighted to Children's Mercy, in Kansas City, mo.

When he arrived at the hospital he was literally minutes away from death. Without the Ecmo my son would not be alive today. But there are some possible side effects as he gets older. Which are hearing loss, and possibly being mentally handicapped. But i would rather deal with one or both of those than for him to have lost his life.

My son is now one year old, and is showing no signs of major side effects like the hearing loss, or mental handicap. He was a little late sitting up due to high muscle tone. And he has tubes in his ears from fluid build up, but there is no indication that it is caused from the ecmo. ECMO is a miracle.

The ECMO is a big, scary machine, but it is also a life saving machine, and when used properly, is not just a last ditch effort of a losing battle, but an effective treatment.

My daughter was born with Congenital Diaphragmatic Hernia (CDH). This is a serious condition with a 50 percent survival rate nationwide. ECMO is used in about 30 percent of the cases (so is fairly standard in the treatment of severe cases of CDH). The hospital where she was treated, Shands Hospital in Gainesville, Florida, and the surgeon she was treated by, Dr. Kays, are experts at this machine, and it was by no means a death sentence.

My daughter was on ECMO for days two through five of her life, it got her over a hump. She had no complications on ECMO and she was able to come home after two months in the hospital. She is now two years old and perfect, developmentally on target, and shows no signs of ill effects. I know this to be true of several CDH survivors.

More often than, people don't do well on ECMO. It's a last-ditch effort. I would withdraw on my loved one before being ECMO'd. -ECMO-certified RN

my son is currently on the ecmo machine and so far, it has saved his life. He has now been on it for 5 days and is doing great. they are going to start turning it down tomorrow and begin the weaning process. Without this machine, my son would have died.

My grandmother was diagnosed with ARDS. She has been in the hospital for three weeks and the doctors are saying there hasn't been any improvement. Could this machine help her?

ECMO saved my son's life. It was his last option and believe me, it's not pretty at all. The machine is huge and scary but thank God it exists. My little guy had several strokes while on it and has deficits but he is alive.

My daughter was placed on ECMO at the age of two months because of complications from pertussis. She developed pulmonary hypertension prior to going on and was non responsive to ventilation. She stayed on for 10 days and I was told that she had a chance of having delayed learning because the carotid artery would be tied off. This seems to be true as of right now. She is now a 4 month old and has yet to return home.

Ultimately, she has severe lung damage and possibly still pulmonary hypertension. At this very moment she is having episodes of desaturations and the doctors are puzzled as to what it could be. The believe that it may be something neurological due to ECMO. Could this be true if an EEG confirms that her brain movement when upset is normal? --sLeyva

The limit of one week on ECMO is actually not true. It is true that the longer you are on ECMO the greater the risk of complications. Just as it is true that the longer you are on a ventilator the greater the risk of complications. And the longer you are in the hospital the greater the risk of complications.

The general rule for length of time on ECMO should be as long as the benefits outweigh the risks. For some that may only be a couple of days. For others that may be months.

As far as organs being at 100 percent function, no. The goal of ECMO is to support the body until the body/organ(s) has a chance to heal/recover/be treated. Once the risks of ECMO outweigh the benefits of ECMO, then the patient should come off ECMO. That may be before the organ(s) targeted for support are back to 100 percent. But they hopefully are recovered enough to be able to support life.

When you're on the ecmo machine, isn't it true that they do not take you off until your organs are working 100 percent? Someone please tell me!

@musicshaman -- You're right, there is a time limit on how long a patient can safely stay on ECMO.

For adults, the normal length of time to stay on ECMO is about a week to a week and a half, then followed by a weaning off period, but this can be extended slightly. However, the risk of complications -- bleeding, infection, emboli, etc. -- increases the longer a patient remains on ECMO.

Newborns can remain on ECMO for up to 21 days, although most only stay on it for about a week.

The longest anyone has survived on ECMO is 117 days, however, an ECMO treatment of this duration is extremely unusual.

The long and the short of it is, the longer a patient stays on ECMO, the higher risk of serious complications, so doctors try to keep patients on it for as short a time as possible.

Is there a time limit to how long someone can safely stay on ECMO?

I had heard that there can be really serious side effects if patients are kept on it too long. Does anybody know about this?

Many stories the involve ECMO are heartbreaking and make you hold your breath, but the reality is that is very risky and even hard to look at. Most recently, ECMO was consistently used when dealing with the Swine Flu or H1N1 outbreak.