ecmo at birth

[Upsydaisy2005]

Hi

My daughter had ECMO at birth for meconium aspiration. . Developed seizures at the age of 15. Awaiting MRI head. I was told possible hypoxic injury from ECMO caused a scar , acting as focus of epilepsy. Anyone on same boat?

[Gooddaysunshine]

Hello, sorry to hear about your daughter's seizures. I was on ECMO as an adult in winter 2020/21, and had some small seizures and one major one, while I was on the machine.

Thankfully it was not a stroke as first feared.

I have not had any more seizures, but they have now discovered - via an MRI scan - some white matter lesions on my brain, which may be connected to my time on ECMO, and which may also be partly at cause for my continued brain fog, balance issues etc.

I hope they can treat whatever is causing your daughter's seizures.

[Upsydaisy2005 in reply to Gooddaysunshine]

Thank you for your reply. I hope all goes well with you. It’s really useful to learn how people are affected afterwards.

[Sepsur]

the only seizures I’ve ever had were an allergic reaction to some drugs I was on in ICU ( so not very helpful I’m afraid).

I hope they can get to the bottom of your daughter’s issues.💙

[Grant_za]

Hi Upsy - this has been quite an ordeal for your daughter.I am a perfusionist - our core function to the manage the "heart-lung machine" during cardiac surgery. We are also called to manage the ECMO circuit as part of the team supporting patients on ECMO.

In my experience (which excludes the treatment of new born patients) most, instances of oxygen deprivation occurs between diagnosis and actual placement on ECMO. Unfortunately there is a very small and unforgiving window in which damage can occur - usually around 3 minutes.

Your daughter would have been put on supplementary oxygen support before a decision would have been made to move to ECMO.

ECMO is a big step, but it allows both the lungs and heart to "rest and recover" while the ECMO circuit takes over the function of those organs.

In all, your daughter's condition needs to be comprehensively investigated.

There is really not much more I can add besides suggest consider 2nd external opinion as to what has happened, and why. Sometimes we are inclined to set aside our own internal instincts.

Wishing all the best to both yourself and your daughter.

[Upsydaisy2005]

My daughter was born in Royal Berkshire and then transferred to Leicester ( gel field for ECMO). You are correct, she was in ICU initially on ventilator. Later , after 48 hrs, transferred.

Her ecmo was complicated as a junior registrar was performing the central line and caused an iotrogenic injury to heart, resulting in cardiac tamponade. She had a cardiac arrest for 3 min, emergency thoracotomy was done , resuscitated. Her discharge summary states - hypoxic is chromic injury grade 2.

Do you come across this sort of complications often?

[Grant_za in reply to Upsydaisy2005]

Wow. Your daughter has really been through quite a time.Ventilator, ECMO & thoracotomy.!!!

It's seldom I'm lost for words, but that "trifecta" of treatment is mind boggling.

While I'm a perfusionist, not a critical care physician or emergency surgeon, I've spent a massive amount of time in theatre along with ECMO support - I've yet to come across a patient like your daughter who has pulled through all this. They are out there, but rare.

Your daughter is clearly very strong, and a fighter.

An emergency thoracotomy is also about as rough and invasive as things can get.

Your daughter is a winner, and she clearly has a superb medical team who will leave no stone unturned.

Please keep us updated - and all the best for you and your daughter.