Full Term Baby on EMCO

[Catherine4488]

I'm wondering if anyone can help as I'm feeling beyond desperate. My sister gave birth to a baby girl three weeks ago via c-section in Dubai. She is a UK expat living in Dubai. She had a very straightforward pregnancy, numerous scans and tests which showed no problem with her or the baby. Her baby was born full term and weighed 7 pounds 1 ounce. Very quickly after being born her baby had severe breathing difficulties, had to be resuscitated and put on a ventiltor. This wasn't enough and she was declining so was taken to Abu Dhabi and has been on EMCO since 1 November. Her lungs just won't function. Her lungs collapse, seem to be full of fluid and just aren't getting any better. They have run some genetic testing but are waiting the results. The doctors are at a complete loss as to what the problem is and why her lungs won't function. Her brain and the rest of her organs are functioning well. I was wondering if anyone had experienced anything similar. I suppose I'm really looking for some hope. Please if anyone can help or shed some light, please reply. Thank you

I meant to type ECMO

I’m so sorry to hear what your family is experiencing and I am presuming that the baby is in the best place ,receiving specialist care…so it can just be a hopes and prayers situation that they will hit upon the right solution. Babies born by c-section can be at higher risk of “wet lung syndrome” or acute respiratory distress syndrome ,as they don’t have the lung fluid “ squeezed out” during birth. Prem babies also may have surfactant deficiency . However ,it seems they are looking for a genetic cause, as in full term infants a rare genetic mutation can cause a deficiency of surfactant ( which allows the alveoli to stay open).

Thank you so much for your reply. It’s just the most awful time. I would imagine if she had “wet lung” there would be some signs of recovery from that now. I’m terrified of what the genetic testing might show, presumably the outcomes of this wouldn’t have shown in a scan or a test pre birth. I know she’s having the best care but I just can’t work out how they can’t work out what the problem is. Do you know if the lack of surfactant is treatable? I know she’s had three doses surfactant medication since being in Abu Dhabi and it works for the life span of the medication but once it wears off, it’s back to square one.
Thank you so much again for your reply.

My friend's full term baby who went on ECMO in gosh after meconium aspiration has just aced her GCSEs❤️

Thank you for your hopeful message x

It would only be speculation as at the end of the day, the Dr’s there will be doing the very best they can ,I know it’s frustrating & upsetting when answers are taking so long. If you do get an answer from the genetic testing , the best option may be to encourage the Dr’s, or for the family to research, and to seek opinions from outside Dubai….it’s a small country and the smaller the country the less the direct experience of treating, especially when conditions are very rare…….so perhaps trying to get further info from eg. Great Ormond st, may be of help perhaps?

Thank you, I know her doctors there are speaking to colleagues internationally and some have worked at Alderhay and Great Ormond street themselves. There’s no family history on either side of any thing genetic but I know mutations are just that, something that shouldn’t have happened but did. Thank you so much for your reply.