Are there any positive long term outcome stories from babies on ECMO?

[smta]

UPDATE: My son came home from the NICU after 46 days not currently on oxygen and not on a g-tube. He did not end up needing ECMO.

I had my son at 37+3 last Friday, March 10 in an unexpected c-section as a result of breech presentation discovered sudden low amniotic fluid when we went in to have an ECV.

He received an 8 at 1 min and 9 at 5 min APGAR scores. I had a minor hemorrhage during the c-section. He was taken to the level 2 NICU, diagnosed w/ respiratory distress syndrome and on CPAP then intubated and that gave him a pneumothorax; they added the first dose of surfactant and put in a chest tube. Then they put him in an ambulance to a Level 4 NICU to use a Jet and I got discharged early. He was diagnosed with pulmonary hypertension & a small PDA; he then changed to an oscillator and had his oxygen levels lowered for a while but now it’s 100%. Given another dose of surfactant. He has an IV / multiple PICC lines with various meds from heparin to fentanyl, Sildenafil and nitric oxide now. He’s also had 2 blood transfusions so far.

It’s been ups and downs. Positive prognosis after positive prognosis then today the most grim - ECMO. Are there ANY positive stories out there? Please - I’m desperate for some hope.

 

[katrina2017]

@smta My daughter is on ecmo currently since she was about an hour old. We expected it based on a prenatal diagnosis. Ecmo is scary but Ecmo can save his life and give his body the chance to regain its strength and continue to fight. My daughter was doing very well and getting ready to step down off the machine when she caught an infection. Thankfully, they can support her better with the machine than if they’d already weaned her off. It isn’t something I ever wanted her to need but I’m so glad that they have it.

 

[azbycudos]

@smta The main issue is what is the cause of needing ecmo. Lots of kids are on ecmo for various reasons. Depending on what led them to ecmo and how long they were on it, they can have thriving futures. ECMO itself won't have as much influence on their future as the why they are on ecmo and the disease course.

ECMO was offered for my son when nitric + oscillator + CRRT wasn't working for his sepsis and kidney injury. We elected to not go with ecmo because he was so sick we didn't see it likely helping him and just prolonging suffering. Thankfully he pulled through. It turns out he had a pneumothorax and rhinovirus on top of everything else. Once his chest tube was placed he turned around and in 3 weeks he was off dialysis and extubated.

 

[smta]

@azbycudos I think (I’m v scatter-brained rn) his biggest issue is his lungs. He has pulmonary hypertension and a small PDA but has been struggling to not be dependent on 100% oxygen on the oscillator. They added Sildenafil yesterday and another sedative because he’s been trying to breathe over the vent which hinders it’s ability to reduce CO2. His PaO2 has increased the last update we had so they put off ECMO talk yesterday - about to drive back momentarily.

 

[azbycudos]

@smta Do they have him on cortisone or any other steroids?

Did they give Surfactant?

 

[smta]

@azbycudos Hydrocortisone + two doses of surfactant

 

[nicolelovesjesus]

@smta I know a lot of kids with congenital heart defects who were on ECMO for a time and successfully came off! (My daughter had CHD, a stroke at birth, and extended intubation, though no ECMO.)

I’m sorry you’ve had such a stressful week. Please keep us posted on how little one progresses

 

[shamila]

@nicolelovesjesus Ours has a CHD. The hospital were delivering at has an ECMO literally in the next room and they run them right over after cleanup and initial brief skin to skin. Incredibly grateful.

 

[nicolelovesjesus]

@shamila Which CHD? How is your little one doing?

 

[shamila]

@nicolelovesjesus ToF

We are luckily near Dell Children’s and a great surgeon (one of the best!). Shes right in the middle but extremely russian roulette right now on severity. Healthy otherwise

 

[nicolelovesjesus]

@shamila Aww she’s a little peanut! Sorry that you’re in the throes of NICU life. My daughter is now 3. She had HLHS (though it was downgraded after her first surgery) and coarctation of the aorta. She required two open heart surgeries but is now heart healthy. Best of luck to your mini!

 

[freak_accident]

@smta My little dude nearly needed ecmo at birth due to meconium aspiration. He was on the oscillator and nitric. He's now about to turn 2. He's a little hellion. I think the reason for ecmo is a lot more indicative of outcomes than ecmo itself to be honest. Hang in there. It's a really shitty club to be in, sorry you are experiencing it. All the best for your little one.

 

[smta]

@freak_accident Thanks so much for the reply - I think (I’m v scatter-brained rn) his biggest issue is his lungs. He has pulmonary hypertension and a small PDA but has been struggling to not be dependent on 100% oxygen on the oscillator. They added Sildenafil yesterday and another sedative because he’s been trying to breathe over the vent which hinders it’s ability to reduce CO2. His PaO2 has increased the last update we had so they put off ECMO talk yesterday - about to drive back momentarily.

 

[roseyviolet]

@smta Hi, my son was on ECMO at birth. His condition (CDH) is one of the top 2 causes for needing neonatal ECMO- he was born with his liver and intestines crushing his lungs which were underdeveloped because of it. He also had pneumothorax happen on his better lung at birth. They initially thought he would need a few weeks on it, but he stabilized and was able to come off after about 4 days, after which he had the surgery he needed. He had his up and downs as his condition is pretty complicated but he is 2.5 now and such a happy bright kiddo.

 

[smta]

@roseyviolet Thanks so much for the reply. He sounds like an amazing little boy

 

[christian6000]

@smta A friend of mine’s 38 weeker was on ECMO for two weeks due to a heart condition, he’s a perfectly normal 1 year old now!

 

[sadie316]

@smta My son was on ECMO for 9 days after his hernia repair surgery. Apart from his scars you wouldn't know what he's been through, he's a bright funny 19MO now, with no delays at all.

But I can totally understand your fear.. we were devastated when they put him on ECMO, it's so scary but it saved his life.

 

[freeinchrist87]

@smta Hi there Mama!

My beautiful baby girl was on ECMO for a week. She was 40 weeks and 3 days. I also had an unexpected C section due to her heart rate slowing down. Within the first 12 hours of her life they had to lifeflgiht her to one of the 3 hospitals in the state that did the procedure.

She was in the NICU for 46 days. She was on ECMO for a week, but when she woke up she basically had to learn how to be a baby and eat and use the bathroom.

My advice, be there. Celebrate the victories. Your little boy knows your voice. He knows you love him. Make your presence known any way you can. Communicate with the care team. Ask questions. Your nurses and doctors are there to help and facilitate in any way they can.

The NICU team we had was amazing. They treated our daughter like she was one of their own. They celebrated so many things with us, when she first opened her eyes, when she used her diaper, when she took her feeds. The first day I was able to hold her (8 days after she was born) I had at least 6 or 7 people in there for support.

After she came off ecmo, even the care team couldn’t believe it. We had her tested for every possible reason as to why it happened and they still don’t know the cause. It was scary as hell, but I never let myself go to a dark place. I knew she would find a way to be ok.

When we have our check ups now, we always check in with her care team and keep in contact. They are part of why we think she did so well.

My baby girl turned 8 months old today. To this day, her care team shares her picture with the staff to show off our miracle girl.

She is already showing her curiosity, love, and playfulness. Some days I look at her and I still can’t believe it. She is right on track at all her appointments and is thriving.

It’s going to be ok. It is hard as hell right now, but just be there for your little boy. He knows you’re there and he knows you love him.

If you ever need someone to talk to, please feel free to privately message me. I’d be happy to help in any way.

 

[smta]

@freeinchrist87 Thank you for sharing your story and your kind words. So happy for you that your little girl is thriving

 

[ronaldcho]

@smta My baby was a PPHN baby, 37 plus 5. Had to be transferred for cooling and potential ECMO, also discharged early. The pda cshowed evidence of closing I think right before we were discharged. My baby made a fast turn around when he was transferred, we later found out he had a stroke. He was home on oxygen due to severe sleep apnea and BPD. Completely “typical” so far.

My baby didn’t need cooling or ECMO- but keep in mind that those things have saved so many lives. ECMO keeps blood gasses good, hopefully while the lungs and heart sync up to the outside world.

Please please ask your medical team to explain it as many times as you need. As many. Times. As. You. Need. When brains experience trauma they only take in like less than 50 percent of info given… as low as 10%.

I want to add a message of solidarity with “positive prognosis after positive prognosis” and then surprising dip to next level of care. It takes a while to shake, the ride of the NICU is the most agonizing thing. Moment by moment. Just take things moment by moment. Sending all the best energy to you and your baby.