10yo airway reconstruction

[wowzamate]

Dear MNetters,

A friend's dd (10yo) had a freak accident mid-last year where she went to use a swing at school (not UK) and it fell on her. Her neck was badly impacted and she has undergone a number of surgeries as well as getting so close to losing her life. Fast-forward to present time, she's had lots of progress but can't speak.

She is fitted with a tracheostomy which her parents change everyday. This has been working relatively well, but the child is now experiencing lots of pain when the tracheostomy is being changed and the parents have been told, it's because the hole through which the tracheostomy goes, needs enlarging (I didn't understand this bit. So bear with me if this doesn't make sense). The goal is to have her airway reconstructed.

Is anyone familiar with this kind of procedure and know where best to go (in the UK) or which doctors/hospitals to see?

Or if someone has had this procedure successfully done in another country, can you please share what the experience was like and any pitfalls to look out for?

All advice will be greatly appreciated. Many thanks.

I'm afraid I don't have any direct experience of this but I know that Great Ormond Street has a ward for children who live on ventilator support through a tracheostomy. From memory it's kangaroo ward I think.

Great Ormond Street will take private referrals but its shockingly expensive. The Royal Brompton is also one of the top respiratory hospitals in the UK but I don't know if this falls under respiratory or ENT.

Agree, Great Ormond Street Hospital are the ones to contact. They have a specialist tracheal surgery team and provide the UK national service. They take international referrals too.

It's probably such an unusual injury and the treatment will be so specific to your friend's dd that it might be hard to find advice from other parents that's relevant. Sounds like an awful time for them, I hope everything goes well with her future procedures.

It's worth reaching out to the embassy of the country they are in (especially if its a middle Eastern country) as many of the embassy's have a special relationship with Great Ormond Street.

When my dd was there they had lots of Qatari children who were having their treatment paid for by the Qatar embassy.

ive sent you a PM. Agree great Ormond street is where you want.

My dd had a trachy and we had friends whose children had trachys and vents and were due for airway reconstruction using parts of their ribs when older.

Is there a reason they change it every day? It’s been 5 years since I’ve done it, but we changed the tapes daily and the trachy itself weekly. We were under Evelina and the team there were very good.

Many thanks everyone for your thoughts and advice. I was using my phone to scroll through MN and didn't see that responses had come through. But now on my laptop, I see that wasn't the case. It's nice to have had the responses.

The cost of private medical care is definitely a concern but that's being handled so hopefully, it won't be a problem.

I'll look at the options above and find out more from the hospitals. Many thanks everyone.

Know I’m late to the party, my dd has a trach now and Rvi in Newcastle is fab! Xx